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#food #travel #sports #news #june #sunday

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #bliss ters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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6/1/2024, 4:00:35 PM

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5/26/2024, 4:00:31 PM

Haven’t updated my workout photos in a while. Feeling great today! #ftmathlete #ftmfitness #ftmbodypositive #ftmtransman #ftmmuscle #ebawareness #eb🦋 #butterflychildren #rareskindisease

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5/26/2024, 1:18:50 AM

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5/25/2024, 4:00:31 PM

I love the way the sun hits my eyes. I may work nights but this vampire does love the sun! #ftm #ftmguys #ftmguysofig #ftmguysdoitbetter #ftmguywithEB🦋 #eb #ebawareness #eb🦋 #butterflychildren #butterflyskin #epidermolysisbullosa

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5/23/2024, 5:44:30 PM

Debra Indonesia mengucapkan Selamat Merayakan Hari Raya Waisak. Semoga selalu mendapatkan kedamaian, kebahagiaan, serta kesejahteraan bagi semua makhluk. - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #waisak #vesakday #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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5/23/2024, 2:49:44 AM

My first photoshop edit! #photoshop #midjourney #antipodean #butterflychildren

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5/20/2024, 1:26:30 PM

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5/19/2024, 4:00:37 PM

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5/18/2024, 4:00:31 PM

@ebloppet.se Anmälan har öppnat! www.ebloppet.se Den 14 september klockan 11:00 i Kåsjön, Partille är det dags. Hoppas vi ses där - detta är det sista loppet vi arrangerar och visst vore det häftigt att avsluta med en grande finale?! • Vi tycker verkligen att du ska ta chansen att vara med i år, på just dina villkor. Spring/jogga/gå/rulla detta familjära lopp där alla kan vara med. Välj mellan tre sträckor: 3,1 eller 10,5 eller 15,5km. • Det viktigaste är inte att springa, det viktigaste är att bidra till forskningen. Om du inte kan komma den 14:e så går det jättebra att enbart skänka en slant. Som företag kan ni gå in som sponsor, mer info på hemsidan. • Swish: 1230206490 Bankgiro: 5149-9028 www.ebloppet.se • #Ebloppet #run4ebsweden #cureeb #healeb #fighteb #stopeb #epidermolysisbullosa #butterfly #butterflychildren #fjärilshud #fjärilsbarn #välgörenhet #välgörenhetslopp #partille #göteborg #öjersjö #kåsjön #älskalöpning #trail #trailrunning #springigbg #löparglädje #trailrunningsweden #löpning

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5/15/2024, 10:11:56 PM

Posted @withregram • @ebloppet.se Anmälan har öppnat! www.ebloppet.se Den 14 september klockan 11:00 i Kåsjön, Partille är det dags. Hoppas vi ses där - detta är det sista loppet vi arrangerar och visst vore det häftigt att avsluta med en grande finale?! • Vi tycker verkligen att du ska ta chansen att vara med i år, på just dina villkor. Spring/jogga/gå/rulla detta familjära lopp där alla kan vara med. Välj mellan tre sträckor: 3,1 eller 10,5 eller 15,5km. • Det viktigaste är inte att springa, det viktigaste är att bidra till forskningen. Om du inte kan komma den 14:e så går det jättebra att enbart skänka en slant. Som företag kan ni gå in som sponsor, mer info på hemsidan. • Swish: 1230206490 Bankgiro: 5149-9028 www.ebloppet.se • #Ebloppet #run4ebsweden #cureeb #healeb #fighteb #stopeb #epidermolysisbullosa #butterfly #butterflychildren #fjärilshud #fjärilsbarn #välgörenhet #välgörenhetslopp #partille #göteborg #öjersjö #kåsjön #älskalöpning #trail #trailrunning #springigbg #lö parglädje #trailrunningsweden #löpning

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5/15/2024, 9:31:36 PM

Pacientská organizace @debraczech vyhlásila na středu 15. května 2024 Den naruby. Máme radost, že se ho letos účastníme i my, Le Hotels Group. Den, kdy každý může velmi jednoduše, ale zřetelně vyjádřit svou podporu a sounáležitost lidem s tzv. nemocí motýlích křídel. 🦋 Stačí si obléknout v tento den cokoli naruby. A proč zrovna 15. května ? Protože v tento den byla přesně před 20 lety založena DEBRA ČR. 🎉 Připojte se k nám a vyjádříte tak podporu lidem s nemocí motýlích křídel🦋🎗 --- The patient organization @debraczech has declared Wednesday, May 15, 2024, as Inside Out Day (Den naruby). We are delighted to announce that this year, Le Hotels Group is participating. Inside Out Day is a symbolic event highlighting the lives of people with Epidermolysis Bullosa (EB), also known as Butterfly Skin Disease. 🦋 By wearing our clothes inside out on this day, we remind ourselves of what it’s like to live with this condition, expressing our support and solidarity. This year’s event is even more significant as DEBRA ČR celebrates its 20th anniversary🎉 Join us in supporting Inside Out Day by wearing your clothes inside out today and sharing this message with others. 🎗🦋 #DEBRA #lehotelsgroup #naruby #CSR #jsemNADOTEK #nemocmotylichkridel #butterflychildren

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5/15/2024, 2:53:04 PM

@ebloppet.se ⭐️Nu är vi lite extra stolta!! ⭐️ • 2023 samlade EB-loppet med hjälp av alla er fantastiska välgörare in 185000kr till forskning - STORT TACK!! Efter dialog med vännerna i Debra Österrike kring aktuella studier som pågår så valde vi att för tredje året i rad att skänka pengarna till ”Leon 1” - läs gärna mer på vår hemsida. Totalt sett har vi då med er hjälp finansierat så mycket som 1/3 av hela projektet, visst är det häftigt?! • ”DEBRA Austria, Prof. Carlos Leon, and his team are grateful for your contribution. It is exceptional how much funds you raised for EB research. What you achieved in providing almost EUR 50.000 for a research project is incredible.” • #Ebloppet #run4ebsweden #cureeb #healeb #fighteb #stopeb #epidermolysisbullosa #butterfly #butterflychildren #fjärilshud #fjärilsbarn #välgörenhet #välgörenhetslopp #partille #göteborg #öjersjö #kåsjön #älskalöpning #trail #trailrunning #springigbg #löparglädje #trailrunningsweden #löpning #debraaustria #debrainternational

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5/13/2024, 7:49:16 PM

⭐️Nu är vi lite extra stolta!! ⭐️ • 2023 samlade EB-loppet med hjälp av alla er fantastiska välgörare in 185000kr till forskning - STORT TACK!! Efter dialog med vännerna i Debra Österrike kring aktuella studier som pågår så valde vi att för tredje året i rad att skänka pengarna till ”Leon 1” - läs gärna mer på vår hemsida. Totalt sett har vi då med er hjälp finansierat så mycket som 1/3 av hela projektet, visst är det häftigt?! • ”DEBRA Austria, Prof. Carlos Leon, and his team are grateful for your contribution. It is exceptional how much funds you raised for EB research. What you achieved in providing almost EUR 50.000 for a research project is incredible.” • #Ebloppet #run4ebsweden #cureeb #healeb #fighteb #stopeb #epidermolysisbullosa #butterfly #butterflychildren #fjärilshud #fjärilsbarn #välgörenhet #välgörenhetslopp #partille #göteborg #öjersjö #kåsjön #älskalöpning #trail #trailrunning #springigbg #löparglädje #trailrunningsweden #löpning #debraaustria #debrainternational

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5/13/2024, 10:32:16 AM

Happy Mother's day to all EB Moms ❤❤❤ #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #bliss ters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior💪

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5/12/2024, 4:00:45 PM

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5/11/2024, 4:00:37 PM

Debra Indonesia mengucapkan Selamat Merayakan Hari Kenaikan Isa Almasih 🕊️ - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #kenaikanisaalmasih #ascensiondayofjesuschrist #ascensionday #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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5/9/2024, 3:00:19 AM

While I had so much fun this weekend…I was having to push through the pain from blisters on my feet. I had Field Day Friday & from the running and the heat I ended up with blisters on both feet. Even though my feet are very sore I’m continuing to push through because “Give Up” & “Quit” are not in my vocabulary. I’ll head home after tumbling to soak my feet in hopes it will take away some of the pain. #epidermolysisbullosa #epidermolysisbullosaawareness #ebawareness #ebwarriors #ebresearch #findacure #butterflychildren #ebsucks #lifewitheb @ebinfoworld @ebresearch

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5/7/2024, 1:42:28 AM

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5/5/2024, 4:00:41 PM

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5/4/2024, 4:00:35 PM

For @danilakozlovsky's birthday this May 3rd, share a #BirthdayGift in his honour, with a small donation to the #ButterflyChildrenFoundation 🦋. #ButterflyChildrenFoundation has been providing comprehensive assistance to children 🧚‍♂️🧚‍♀️🧚 with a rare disease, #EpidermolysisBullosa and their families. You can easily find out how to donate @detibabochki_fund 🔗 https://deti-bela.ru/donate/ ABOUT EB ⬇︎⬇︎⬇︎ EB is due to a mutation in at least one of 16 different genes. Some types are autosomal dominant while others are autosomal recessive.The underlying mechanism is a defect in attachment between or within the layers of the skin. Loss or diminished function of type VII collagen leads to weakness in the structural architecture of the dermal–epidermal junction (DEJ) and mucosal membranes. There are four main types: epidermolysis bullosa simplex (EBS), dystrophic epidermolysis bullosa (DEB), junctional epidermolysis bullosa (JEB), and Kindler syndrome. The diagnosis is suspected based on symptoms and confirmed by skin biopsy or genetic testing. There is no cure for the condition. Management involves wound care, pain control, controlling infections, nutritional support, and prevention and treatment of complications. About half a million people are affected globally. It occurs equally commonly in males and females. #DanilaKozlovsky #ButterflyChildren #butterflydisease🦋 #Support #Donate

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5/2/2024, 10:33:18 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/28/2024, 4:00:19 PM

My poor remi played outside for about 30 minutes yesterday evening. He was making a point at the end of a stick. It hasn't stopped him from anything today. But he is in some pain. #butterflychildren #epidermolysisbullosa #eb #skindisease #ebawareness P.S. He epically stepped in chicken poo right before I took this pic. 🤣

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4/28/2024, 12:24:11 AM

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4/27/2024, 4:00:16 PM

Proud to sponsor the Heroes for Hallie Grace Inc. 3rd Annual Butterfly Ball on June 7th at Savannah Station. If you'd like more details on becoming a sponsor, donating a silent auction item or purchasing tickets to attend, visit hallieflies.com or message me. #enjoyeveryday #EBResearch #butterflychildren #hallieflies

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4/25/2024, 4:00:20 PM

Sejak bisa tulis namanya sendiri sekarang sudah mau selalu nulis, jadi hari ini berhasil tulis nama adeknya. Kalimat yang dia sering semangatin untuk dirinya sendiri "Taqiyyah tidak akan menyerah dan putus asa, Taqiyyah harus bisa !! Semangat selalu anak hebat, anak kuat 🔥🔥🔥 #anakkuat #anakhebat #butterflyskin #epidermolysisbullosa #semangat #pejuang #belajarnulis #anakhomeschooling #belajardirumah #belajardirumahsaja #belajardirumahbersamaibu #taqiyyahkhofiyyah #butterflychildren #belajatmenulis

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4/23/2024, 5:58:24 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/21/2024, 4:00:12 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/20/2024, 4:00:11 PM

Don’t miss this! Hallie’s 3rd birthday fundraiser celebration is going to be amazing! 💜🦋💜 GET TICKETS/SPONSOR HERE: 👇 HTTPS://onecau.se/halligrace (Or www.hallieflies.com) #Repost @hookedlikehelen with @use.repost ・・・ Thought we’d dig up this throwback to a time when we were spiffed up and looking dapper, because we have a very special show announcement: we’re honored to share that we’ll be playing the 3rd annual Butterfly Ball in Savannah, GA on June 7th!! 🦋🩷🙏 What is the Butterfly Ball? As you know, we’ve become emotionally connected and invested in helping the search for a cure for EB (Epidermolysis Bullosa). Through some fateful friendships, we were introduced to Anne and her family, and learned about their precious, beautiful daughter, Hallie Grace. @tinybutterflywarrior Hallie Grace was born with junctional EB, and gained her butterfly angel wings on 9.8.21 at 3 months old. The Butterfly Ball was created to celebrate her life and to fundraise for research to cure EB. Hallie Grace’s legacy continues to grow each year and we are humbled to be a part of this one 🙏 Head to our l👆nk up top to find tix to this event, as well as to the @ebresearch Plunge in Nashville on the 27th of this month, and to our “Marigolds” song, for which all the proceeds are dedicated 100% to the Butterfly Children 🦋 Thank you, love you all! Life is short and there is so much beauty to be thankful for 🫶 📸 @realangelpicturesnotfaked #hookedlikehelen #epidermolysisbullosa #ebawareness #ebresearch #butterflychildren #dreamyphotography #alternativemusic #1980sfashion #80saesthetic #pinkhairdontcare

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4/16/2024, 9:43:06 PM

Thought we'd dig up this throwback to a time when we were spiffed up and looking dapper, because we have a very special show announcement: we're honored to share that we'll be playing the 3rd annual Butterfly Ball in Savannah, GA on June 7th!! 🦋🩷🙏 What is the Butterfly Ball? As you know, we've become emotionally connected and invested in helping the search for a cure for EB (Epidermolysis Bullosa). Through some fateful friendships, we were introduced to Anne and her family, and learned about their precious, beautiful daughter, Hallie Grace. @tinybutterflywarrior Hallie Grace was born with junctional EB, and gained her butterfly angel wings on 9.8.21 at 3 months old. The Butterfly Ball was created to celebrate her life and to fundraise for research to cure EB. Hallie Grace's legacy continues to grow each year and we are humbled to be a part of this one 🙏 Head to our l👆nk up top to find tix to this event, as well as to the @ebresearch Plunge in Nashville on the 27th of this month, and to our "Marigolds" song, for which all the proceeds are dedicated 100% to the Butterfly Children 🦋 Thank you, love you all! Life is short and there is so much beauty to be thankful for 🫶 📸 @realangelpicturesnotfaked #hookedlikehelen #epidermolysisbullosa #ebawareness #ebresearch #butterflychildren #dreamyphotography #alternativemusic #1980sfashion #80saesthetic #pinkhairdontcare

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4/16/2024, 3:40:55 PM

OUR IMPACT | Last year we surveyed our EB community to try to understand how DEBRA had impacted them and their families. While some impact can be measured, others can only be felt. We loved hearing such positive feedback from our community about the mum's respite weekend we held in beautiful Byron Bay. And, in 2024, we are so excited to announce that we have expanded our respite offering and will now be holding a respite event explicitly tailored to our EB dads. We know caring for children with EB can be tough, and we are proud to offer a little rest for our parents. . . . #DEBRA #EB #Carers #Respite #ButterflyChildren #EpidermolysisBullosa

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4/16/2024, 11:50:19 AM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/14/2024, 4:00:12 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/13/2024, 4:00:13 PM

Debra Indonesia mengucapkan Selamat Hari Raya Idul Fitri 1445 H. Taqabbalallahu Minna Wa Minkum, Minal Aidin Wal Faidzin. Mohon maaf lahir dan batin 😇🙏🏼🌙 - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #eidalfitr #idulfitri1445H #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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4/10/2024, 2:38:02 AM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/7/2024, 4:00:14 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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4/6/2024, 4:00:16 PM

Happy Easter 🐰 to all EB Families! Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/31/2024, 4:00:22 PM

Debra Indonesia mengucapkan Selamat Merayakan Hari Paskah. Semoga hari yang indah ini dipenuhi kehangatan dan cahaya. - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #minggupaskah #eastersunday #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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3/31/2024, 9:10:02 AM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/30/2024, 3:00:32 PM

Wearing a ribbon for my hero. EB Awareness Tee. -Available in White or Athletic Heather - From only $17.99 https://sleepingangeltreasures.com/products/epidermolysis-bullosa-awareness-womens-relaxed #hopeforeb @sleepingangeltreasures Great gift for an EB Parent - Tag a friend who would wear this! #EBawareness #EpidermolysisBullosa #ButterflyChildren #RareDisease #ChronicIllness #EBWarrior #SkinCondition #AwarenessTee #SupportEB #DystrophicEB #EBAwarenessMonth #RareDiseaseAwareness #ChronicIllnessAwareness #WearTheRibbon #RaiseAwareness #SkinDisorder #EBCommunity #CureEB #HopeForEB

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3/27/2024, 3:00:54 PM

Weekend just got a whole lot tastier with mouthwatering Butterfly Chicken and Stuffed Mushroom Tikka from @biryani_grand99 Prepared with authenticated spices with butter glaze.🍗 Give your taste buds a treat and elevate your weekend vibes!! #Biryanigrand #biryanilovers❤️ #butterflychildren #tandoorichicken #foodielover #weekendvibes

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3/24/2024, 8:05:14 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/24/2024, 3:00:39 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/23/2024, 3:00:17 PM

[EID MUBARAK HAMPERS - CELEBRATE EID WITH US!] - Butterverse x Debra Indonesia Small Acts of Kindness, Big Impact Spread love to your loved ones while also donating to our Butterfly Chindren through our Eid hampers. Every profit will benefit Butterfly Children’s wound dressing needs. For more information, check out our digital catalog. 😊🙏🏼 - Setiap kebaikan kecil akan berdampak besar. Sebarkan cinta kasih kepada orang-orang tersayang sambil berdonasi kepada Butterfly Children melalui hampers Idul Fitri kami. Setiap keuntungan akan digunakan untuk biaya kebutuhan wound dressing dari Butterfly Children. Untuk informasi lebih lanjut, lihat digital catalog kami. 😊🙏🏼 #eidhampers #eidalfitr #lebaran #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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3/18/2024, 5:00:50 AM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/17/2024, 3:00:45 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/16/2024, 3:00:25 PM

🦋 Today with our butterfly children, we embarked on a creative adventure! 🌸🎨 We explored the enchanting Bombax Ceiba flower, engaging our senses by smelling, touching, and admiring its vibrant colours. 🌺🌈 Then, we discovered the different parts of the flower, like petals, stigma, filament, anther, pedicel, and sepals. 🌸🌿💡 Together, we created our own Bombax Ceiba flower drawings, using black ink for the pedicel and adding layers of red and yellow for the petals. We used cotton sticks for the filaments and black ink for the anthers. 🖌️✏️ It was a joyous experience full of nature and creativity! 🌼🦋 🎉🌺 #ButterflyChildren #BombaxCeiba #NatureArt #montessori #montessoriinspired #montessorischool #montessorihongkong #montessoriactivity #mulberrytree #mulberrytreeacademy #kindergarten #kindergartenhongkong #hongkong #hongkongkindergarten #steam

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3/14/2024, 8:49:55 AM

Sunday was filled with inspiration, and we've made some root and butterfly children silhouettes. We used silhouette paper and dried flowers, which I laminated to protect them and be able to use them in other projects as well 🌸🌸🌸 I put in the stories the pattern of the butterfly children, and feel free to tag me if you make them 🧚‍♂️ #openendedplay #openendedtoys #creativeplay #creativetoys #imaginativeplay #imagineandcreate #silhouette #windowdecor #windowtransparency #waldorfseasons #waldorfcraft #waldorf #waldorfhome #waldorfhomeschooling #waldorfeducation #steinereducation #artsandcrafts #childrensactivities #handsonlearning #homeschooling #ourhomeschooljourney #ourwayoflife #ourworldofwonder #therootchildren #butterflychildren #driedflowers

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3/13/2024, 2:37:22 PM

FAMILY SUPPORT | DEBRA Australia's family support committee were so proud to be able to fund a laptop for Marcella from NSW who lives with EB. We hope the laptop is a little help in Marcella excelling in school and following her dreams! #EB #EpidermolysisBullosa #ButterflyChildren #DEBRA #FamilySupport

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3/13/2024, 9:35:16 AM

Have you seen the butterfly children dancing in the air with their soft suave wings? We haven't, so I've decided to make them until they'll make an appearance. They were supposed to be an Easter gift, but once again, I got caught, and I must say, the children are some sort of super detectives because nothing goes past them. 😅😅 Does that happen to you, too? If so, I am open to some hiding suggestions because I am out of ideas and hiding places 🤭🤭 #sibyllevonolfers #florisbooks #consciouscraft #childrensbook #bookrecommendations #bookinspiredplay #butterflychildren #waldorfbook #childrenslibrary #bookreviewer #bookinspiredplay #bookstagram #flatlay #openendedplay #openendedlearning #openendedtoys #creativetoys #creativeplay #waldorf #waldorfhomeschooling #dollmaker #waldorfhome #waldorfinspired #waldorfeducation #steinereducation #rudolfsteiner #ourhomeschooljourney #ourworldofwonder #wildschooling #silhouette

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3/12/2024, 2:27:20 PM

Debra Indonesia mengucapkan selamat menunaikan ibadah puasa Ramadhan. Marhaban Ya Ramadhan, Sahabat Debra! - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #ramadhan #marhabanyaramadhan #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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3/12/2024, 5:25:02 AM

Debra Indonesia mengucapkan Selamat Hari Raya Nyepi Tahun Baru Saka 1946. Semoga Tuhan Yang Maha Esa memberikan kedamaian dan pengampunan kepada kita. - Debra Indonesia adalah yayasan nirlaba yang berasosiasi dengan Debra Internasional yang bergerak untuk mendukung penderita Epidermolisis Bulosa (EB). Apabila anda memerlukan informasi lebih lanjut mengenai Epidermolisis Bulosa, silahkan kunjungi Instagram DEBRA Indonesia @debra.indonesia dan website DEBRA Indonesia: http://debraindonesia.or.id #harirayanyepi #dayofsilence #tahunbarusaka #debraindonesia #epidermolisisbulosa #dermatologianak #butterflychildren #debrainternational #pediatricdermatology #raredisease #rareskincondition

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3/11/2024, 1:29:11 AM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/10/2024, 3:00:44 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/9/2024, 4:00:42 PM

Did you know MiaThrives has a podcast? 🎙 Join Melissa and Emily from MiaThrives as they discuss thriving with EB, Butterfly Children, our amazing community and everything in between! We are so excited to connect with you 🥰 Want to be on an episode of the podcast in the future? Send us a message 📧 #torontopodcast #miathrivespodcast #charitypod #miathrives #thrivingwithEB #WeThriveTogether #EBAwareness #EpidermolysisBullosa #GrowingThroughGrief #butterflychildren

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3/6/2024, 9:03:09 PM

this image was taken on monday afternoon by little brother hayes when we were very casually doing some under bed cleaning and reading books. everything was typical. but by the following morning, sabina had 3 of her boo boos, in various stages of healing, inflamed—infected. she awoke from school and wasn’t herself. lethargic, in pain, and febrile. whatever was brewing under the skin was enough to effect her entire little body. we quickly pivoted and got her medical care, wound cultures, antibiotics, the works. yesterday was that reminder of how quickly everything can change. for anyone really, but for her especially. this was the last photo taken of her before then. for 5 years i have been connected with other families who shared their last photos of life before they knew it when EB stole a piece of them. while i am beyond relieved to share she responded well to her treatment overnight and was back to her chirpy little self this morning— the ground was briefly taken out from under our feet and we were reminded to not take a moment with anyone for granted ever, but again —especially her. #shearstrengthagainsteb #strongerthanourskin #epidermolysisbullosa #healeb #ebawareness #cureeb #lifewitheb #junctionalepidermolysisbullosa #raredisease #butterflychildren #nonprofit #jupiterfl #jupiter #florida

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3/6/2024, 4:39:55 PM

It was quite a big challenge to draw Olfers's Butterfly Children. I just wanted to try Butterfly because one of our child at the daycare loves butterfly. Not satisfied,but it's okay! 🦋 オルファースの蝶々の子どもたちを描くなんて、無謀でした。😅😅 ふたつ描いてあきらめました。まだまだです。黒板画の空って本当に難しいです。今一つですが、明日保育園持っていきます。 #オルファースジビレ・フォン #オルファース #butterflychildren #ちょうちょのこどもたち

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3/4/2024, 1:50:34 AM

“With just having rare disease day, I thought I would share a bit more about my EB. Two things you might not know about me is that me EB affects my scalp and I am constantly trying not to itch blisters and scabs. My EB also affects my mouth, causing blisters and wounds. I can’t bite into hard food like apples. This is why you’ll often see me cutting my food into small bites, like burgers and pizza. I get a lot of funny looks! This is your reminder not to judge people, because you never know what they are going through.” - Emily, MiaThrives Creative Director 💛 🦋 #rarediseaseday #rarediseaseday2024 #miathrives #thrivingwithEB #WeThriveTogether #EBAwareness #EpidermolysisBullosa #GrowingThroughGrief #butterflychildren #nonprofit #nonprofitorganization #nonprofitorg #nonprofits #charity #donate #ebadvocate

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3/3/2024, 10:48:50 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/3/2024, 4:00:26 PM

Follow @sosebkidsusa and send birthday cheers 🎉 to our incredible butterflies marking their special day in March! The entire @sosebkids community sends wishes of wellness, serenity, and happiness your way. #unitedwebloom #sosebkids #ebcure #butterflychildren #marchbirthday #ebawareness #rarediseasesupport #epidermolysisbullosa #ebawarenessweek

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3/2/2024, 9:06:45 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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3/2/2024, 4:00:34 PM

(Please read to the end of this post for important information about this doll~!) My post for Rare Disease Day 2024 is finally here~! Given as to how this important day was a few days ago I decided to do a little something special for it~! To be honest I almost totally forgot about this important day~! At first I thought it was on the 28th of February this year but I was shocked to find out that it was on the 29th~! Which makes sense because rare disease awareness deserves the rarest day of them all~! So to spread a little bit of awareness myself I decided to do a little something special for my own rare disease, Epidermolysis Bullosa~! On Doll Divine Sailor Senshi III I made a gorgeous fairy girl who has EB herself~! (EB is short for Epidermolysis Bullosa~!) With her guardian smaller fairy by her side~! 🖤🧚‍♀️🖤 Below are some facts about EB that I would like to share~! •The ribbon color for EB is red~! (Hence the red used in this doll~!) •Children born with EB are referred to as "Butterfly Children"~! (Hence the butterfly wings on this doll~!) •Not just one thing~! EB is a collection of blistering skin disorders that are comparable to second degree burns. Ranging in severity from affecting only the hands and feet to deep scaring that can form hands into "mitts". •More than skin deep~! This autoimmune disorder affects the mucus membranes throughout the body. It can take hair, nails, even teeth. •Friction is a butterfly child's worst enemy~! Even a small fall can cause lesions. •The rarest of them all~! There's an estimated half a million people worldwide that have EB. With 25,000 of them living in the USA. •Unfortunately there is no cure for this horrific rare disease. But with the advances of modern medicine, there is hope~! Thank you all for reading this far into this post~! Rare diseases like EB need all the awareness they can get~! I hope one day in the near future EB along with many other rare diseases get the cure they so desperately deserve~! 🖤💞🖤

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3/2/2024, 12:56:51 PM

#Daisy_collection Daisy is here with her beautifull eyes and uniq smile.she can talk in silence without shaking the lips. she can pass all the massages that comes directly from her hurt by her shining eyes. Daisy is so uniq in details.her beautiful eyebrows recalling so many memories from old centuries wich is almost forgotten. Daisy is here as a remembering statue of the beauty. #nft #nftcommunity #nft_collector #arnauddesplechin #trendingreels #daisy #nft_collector_as_a_collateral #butterflychildren #buyer #nftbuyers #nft_collectors_club #tech #technology #beautiful #old #fashion #face #beautifulgirls

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3/2/2024, 10:41:18 AM

How can you help raise awareness for rare disease day? 1. Education & Sharing Information 🦋 One of the easiest ways to spread awareness is by sharing facts, stories and resources. You can do this on social media platforms and in person. So click that arrow and share away!! 2. Events 💕 You can host and/or participate in events such as walks to raise awareness, fundraisers and educational seminars. Follow your local social media accounts to stay up to date! 3. Use Your Voice 💙 Advocate for policies and initiatives that support research, access to treatment and healthcare resources for individuals affected by rare diseases. #miathrives #thrivingwithEB #WeThriveTogether #EBAwareness #EpidermolysisBullosa #GrowingThroughGrief #butterflychildren #nonprofit #nonprofitorganization #nonprofitorg #nonprofits #charity #donate #ebadvocate #torontocharity #rarediseaseday #raredisease

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2/27/2024, 2:30:05 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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2/25/2024, 4:00:29 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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2/24/2024, 4:00:18 PM

Vienne drew on Remington's bandage this morning before school. He could not stop laughing. Stubborn wound vibes #eb #epidermolysisbullosa #butterflychildren

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2/22/2024, 2:47:16 PM

Help us raise awareness for Epidermolysis Bullosa and let's find a cure!! #epidermolysisbullosa #ebawareness #cureeb #recessivedystrophicepidermolysisbullosa #rdeb #wounds #blisters #eblife #lifewitheb #bandages #gauze #blisteringcondition #raredisease #raredisorder #skindisorder #ebwarriors #stopeb #ebresearch @ebresearch #wefighteb @wefighteb #ebmrf @ebmrf #ebsucks #healeb #geneticdisorder #rarediseaseadvocate #fighteb #butterflychildren #disability #chronicpain #chronicpainwarrior

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2/18/2024, 4:00:28 PM