News

As 2022 draws to a close, we are taking a moment to reflect on this year.
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We have surpassed our target of £30,000 in this year’s Big Give Christmas Challenge! We are so
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After a break due to the pandemic, it was wonderful to be back together at the Queen
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Wow! What a fantastic day we had on Sunday. The sun shone and so did the smiles
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The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has granted marketing authorization approval for Amryt Pharma’s
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InMed Pharmaceuticals has expanded its Phase II trial of INM-755, a cannabinol cream, to include adolescents. The
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Last week, Krystal Biotech announced its submission of a Biologics License Application to the US Food and
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We are absolutely thrilled that our Silver Butterfly Dinner at RIBA raised £352,000 for EB research. You
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Yesterday, the European Commission approved Amryt Pharma's Filsuvez®, a gel treatment for partial thickness wounds associated with
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Researchers at the University of Bristol are investigating the design and development of artificial skin to benefit
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Castle Creek Biosciences raised US $112.8 million in its latest round of preferred stock financing. The financing
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Tetra Bio-Pharma's PPP004, a cannabinoid-derived cream, has been granted Orphan Drug Designation by the European Medicines Agency
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BridgeBio Pharma and Phoenix Tissue Repair reported positive results from a phase II trial of PTR-01, an
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Paediatric patients with recessive dystrophic epidermolysis bullosa (RDEB) are at risk of vitamin D deficiency due to
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The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended approval of Amryt
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We can't quite believe it, but for an incredible 10 years (!) now we have been working
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In collaboration with Great Ormond Street Hospital and Children's Charity (GOSH) and the NIHR we are so
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Thank you to everyone who came to or supported the Walk On The Wild Side event at
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We are hugely proud that the work of Professor Alain Hovnanian, one of the primary researchers on
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Jodie Comer was on hand (or at least, on zoom!) on 11th September this year to represent
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The first global congress on Epidermolysis Bullosa took place on 19-23 January, in London.
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The National Institutes of Health 21st Century Cures Act awarded an $800,000 grant to researchers at the
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We had a fabulous day yesterday for our Butterfly Run 2019. Thank you everyone for coming and
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Our Silver Butterfly Dinner raised over £310,000 this year, held once again at the beautiful Royal Institute
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Cure EB supporters enjoyed lunch with fizz and fascinating conversation in the stunning setting of the Zaha
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We're pleased to announce that Cure EB is joining three other EB charities to fund the clinical
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Sun and fun at the Cure EB Butterfly Run and Family Day! Such a beautiful course at
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Scientists at the Sidney Kimmel Cancer Center at Jefferson University have discovered the cause of aggressive skin
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Sohana talks through what EB is like as a teenager in BBC Three’s Living Differently series.
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Krystal Biotech have announced that the first patient has been dosed in the Phase 1/2 clinical trial
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In 2016, together with two other US based medical research charities, we funded the EB iPS Cell
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A seven year old boy with Junctional Epidermolysis Bullosa child received genetically modified skin grafts and almost
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What a fantastic day we had at the GFI Charity Day this year, thank you to our
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Thank you and well done to all the families that took part in Parallel London's 100m, 1k,
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Congratulations to all of our runners at the Vitality 10K in London this weekend!
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Thank you to everyone that joined us for our 2017 Silver Butterfly Dinner, again hosted in the
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Thank you to the London International Orchestra, whose 30th Anniversary concert was given in support of Sohana
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Sohana speaking at #WEDay UK on 9 March 2016
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Sharmila Nikapota, the mother of a child with a rare genetic disorder, has high hopes for gene
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Lenticol -M Mesenchymal Stromal Cells engineered to express Collagen VII for the treatment of RDEB Dr Waseem
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http://www.mirror.co.uk/news/real-life-stories/schoolgirls-skin-blisters-burns-mum-6491436
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The Silver Butterfly Dinner hosted and organised by the Sohana Research Fund at RIBA on 14 May
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http://www.theguardian.com/lifeandstyle/2014/nov/22/our-fight-to-save-sohana-research-fund
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Every year, BGC Partners and Cantor Fitzgerald, commemorate their friends and colleagues who died on September 11,
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http://www.bbc.co.uk/news/health-24902658
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SRF chosen to benefit from ICAP Charity Day 5 December 2012
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