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FearTheSkirt ⛳ Apr 8
Join my team and play Learn why you should get involved
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Castle Creek Pharma Aug 29
Cheering on ! Thanks for all you do for the community.
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debra of America Sep 5
Proper nutrition is crucial for those living with (EB). Colleen Vicente, a Registered Dietitian at Children’s Hospital of Philadelphia, offers strategies for managing nutrition in children and adults with EB. Learn more at
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Trend Privé Magazine Mar 5
Epidermolysis Bullosa – As fragile as a butterfly….
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Edel O'Toole Jul 4
Interesting paper Laminin 332-Dependent YAP Dysregulation Depletes Epidermal Stem Cells ...
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RareConnect Dec 28
John lives with and still finds hope in serving as an example for others that it is possible to survive difficult times.
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Krystal Biotech Aug 20
KB103 study coordinator Dr. Peter Marinkovich was featured in speaking about trial results, future plans and the hope this developmental could give to all those affected by dystrophic . Read it here:
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UoB Enterprise Jan 20
Newly discovered protein holds hope for gene therapies for psoriasis and
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RareConnect Feb 20
New articles and guidelines have been added to the online community:
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k a i Apr 17
Replying to @ViolinKitty
I have and have had to walk miles to/from work the past two days. But those 'no emission' trains get their electricity from--wait for it--fossil fuels. Just because you can't see the emissions doesn't mean it's
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Rare Voices Australia Sep 8
"Our little girl underwent hours of wound care each day, her feet were bandaged, her fingers were individually dressed, and then her hands were bandaged." Click here to read Lylah's story:
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Assya Shabir Mar 1
I've been feeling so insecure lately because my skins so bad. So the most stupidest thing feels HUGH 😔 is becoming increasingly draining mentally, emotionally and physically 😔😞😢 I just need a day off. Someone be me for the day 😫😫😫
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Krystal Biotech Jun 24
Data from the Phase 2 GEM2 study show that KB103 was well-tolerated and induced rapid & durable wound closure in adult & pediatric patients with dystrophic . Granted RMAT designation paves way for a planned pivotal Phase 3 before 2020.
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Vie Portland Jul 6
Obviously loved ; loved the Kaiser Chiefs; and especially loved Eddie Vedder, not least because of all he has done for people like me with EB. Such a great show! Very grateful to be here.
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Masonic Children's Jun 30
Zuzia and her family traveled from Poland to our hospital several years ago to receive a bone marrow transplant to treat (EB). Now, she has returned for follow-up care and a reunion with her care team. Watch more, via .
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DermaTherapy Bedding Feb 27
is thought to affect 1 in 17,000 births! Around 5,000 people are affected in the UK 😲
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Vicky SN Sep 6
all ready to go in the post.🥳 stickers & mindfulness colouring enclosed
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TrendCommunity Feb 26
I will likely have to live near Cincinnati or another center for my condition until there is a cure. Shane DiGiovanna patient advocate.
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Castle Creek Pharma Sep 3
Increasing awareness for is necessary in improving the management and treatment strategy of those living with this . Looking forward to this project from
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Dermatology Advisor Sep 9
An expert committee has released an evidence-based clinical guideline for in patients with , including recommendations on footwear, management of EB dystrophic nails, and mobility assessment.
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