What to know this EB Awareness Week
EB Awareness Week takes place every year between 25th-31st October. It's an international campaign to increase awareness ... Read More
Cure EB Family Day 2025
Cure EB Family Day is one of the highlights of our year, and this year's event was ... Read More
Ran, walked or wheeled? Butterfly Run 2025 results
What a fabulous day at the Queen Elizabeth Olympic Park for our Butterfly Run 2025! ... Read More
Mission EB results are in
Regular infusions of mesenchymal stromal cells (MSCs) improved symptoms for some children with RDEB, according to results ... Read More
Cure EB Family Forum Foot Hackathon
Earlier this month, members of our Family Form came together online to discuss how they dress feet ... Read More
EB Priority Setting Partnership
Cure EB was happy to partner on an EB research priority setting project with the James Lind ... Read More
Rare Disease Day 2025
It's Rare Disease Day! Plus Krystal's Vyjuvek gets a positive opinion from the CHMP! ... Read More
Cure EB Family Forum – losartan in RDEB
It was wonderful to have Prof Dimitra Kiritsi, Professor of Dermatology at the Aristotle University of Thessaloniki ... Read More
Butterfly Speaker Lunch launches Big Give 2024
Mishal Husein and Hadley Freeman kept us captivated at our Butterfly Speaker Lunch, which marked the start ... Read More
EB Family Day Fun
We are still buzzing from a fantastic Sunday afternoon spent with other EB families, EB researchers & ... Read More
Butterfly Runners Fly High!
Wow! What a fabulous day at the Queen Elizabeth Olympic Park yesterday for our 2024 Butterfly Run! ... Read More
Research the Cure webinar September 2024 – eMSCs in RDEB
Prof Tamai joined us to outline his research into gene-modified blister fluid-derived mesenchymal stromal cells (MSCs) to ... Read More
Jason Isaacs joins Cure EB as patron
We are excited to announce that Jason Isaacs has joined the Cure EB family as our newest ... Read More
Cure EB Family Forum Hand Hackathon
Sharmila and Kate were joined by Natasha to host a 'Hand Hackathon' at our July Family Forum ... Read More
Research the Cure webinar June 2024 – Nanoneedles in EB
We were delighted to be joined by Dr Ciro Chiappini from King's College London to hear about ... Read More
Research Evening at the Royal Institution
We were delighted to welcome donors, researchers, clinicians and EB families to our Research Evening at the ... Read More
FDA Approves Filsuvez for Junctional and Dystrophic EB
The FDA has approved Chiesi's Filsuvez for partial thickness wounds associated with dystrophic (DEB) and junctional epidermolysis ... Read More
All I Want for Christmas is a Cure – Family Forum December 2023
Sharmila and Kate enjoyed getting together with other EB families yesterday at our December Family Forum online ... Read More
Research the Cure webinar – EB-associated squamous cell carcinoma
Prof Andrew South has been researching EB-associated cancer for more than a decade and we were grateful ... Read More
Butterfly Brunch London
Thank you to everyone who joined us for our wonderful Butterfly Brunch including our fantastic speakers, Hadley ... Read More
Rigosertib data presented at EADV Congress 2023
Data on the use of rigosertib in patients with RDEB-associated squamous cell carcinoma was presented at the ... Read More
Cure EB Family Day 2023
It was wonderful to connect with old friends and lovely to meet some new faces at our ... Read More
Butterfly Run 2023 – Fun Times & Run Times!
Thank you to everyone who joined us at the Butterfly Run on Sunday! Whether you ran, walked ... Read More
BGC Charity Day 2023
We had an amazing day at BGC Charity Day! Our patron, Damian Lewis, worked the trading floor ... Read More
Filsuvez recommended for use in NHS to treat EB
The National Institute for Health and Care Excellence (NICE) have recommended Filsuvez for the treatment of open ... Read More
Focus on B-VEC – Family Forum July 2023
We were delighted to be joined by Peter Marinkovich and Suma Krishnan last week to talk about ... Read More
Sohana is 21!
Our beautiful Sohana turns 21 today. Since she was born her dark, curious, intelligent, humorous eyes have ... Read More
BSGCT Annual Conference 2023
Cure EB founder Sharmila Collins was delighted to be asked to present at the BSGCT annual conference ... Read More
Research the Cure webinar – Be Prepared
In our recent Research the Cure webinar, we were delighted to have Prof John McGrath and Prof ... Read More
FDA approves Krystal Bio’s B-VEC for DEB
The FDA has approved the use of Krystal Biotech's B-VEC (Vyjuvek) in patients with dystrophic epidermolysis bullosa ... Read More
Listen out for us on Radio 4!
We're thrilled to be able to announce that we have been chosen by BBC Radio 4 to be ... Read More
To the Point Research Update Evening
For the first time since the pandemic, we were able to host a Research Update Evening on ... Read More
Research the Cure webinar – EB research landscape
In the lead-up to Rare Disease Day, we held the first of our new series of research ... Read More
2022 in Review
As 2022 draws to a close, we are taking a moment to reflect on this year ... Read More
Big Give Christmas Challenge raises over £30,000!
We have surpassed our target of £30,000 in this year’s Big Give Christmas Challenge! We are so ... Read More
Family Day – Community, Fun & the Latest Research
After a break due to the pandemic, it was wonderful to be back together at the Queen ... Read More
The Butterfly Run – the results are in!
Wow! What a fantastic day we had on Sunday. The sun shone and so did the smiles ... Read More
Filsuvez approved in Great Britain
The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has granted marketing authorization approval for Amryt Pharma’s ... Read More
InMed expands Phase II cannabinol trial to include adolescents
InMed Pharmaceuticals has expanded its Phase II trial of INM-755, a cannabinol cream, to include adolescents. The ... Read More
Krystal seeks FDA approval of B-VEC for DEB
Last week, Krystal Biotech announced its submission of a Biologics License Application to the US Food and ... Read More
Butterfly Dinner 2022 raises £352,000!
We are absolutely thrilled that our Silver Butterfly Dinner at RIBA raised £352,000 for EB research. You ... Read More
European Commission Approves Filsuvez for DEB and JEB
Yesterday, the European Commission approved Amryt Pharma's Filsuvez®, a gel treatment for partial thickness wounds associated with ... Read More
Bristol MetaSkin collaboration
Researchers at the University of Bristol are investigating the design and development of artificial skin to benefit ... Read More
Castle Creek Biosciences raises US $112.8 million
Castle Creek Biosciences raised US $112.8 million in its latest round of preferred stock financing. The financing ... Read More
Tetra Bio-Pharma’s PPP004 receives orphan drug status
Tetra Bio-Pharma's PPP004, a cannabinoid-derived cream, has been granted Orphan Drug Designation by the European Medicines Agency ... Read More
Positive Phase II results for PTR-01
BridgeBio Pharma and Phoenix Tissue Repair reported positive results from a phase II trial of PTR-01, an ... Read More
Vitamin D in RDEB
Paediatric patients with recessive dystrophic epidermolysis bullosa (RDEB) are at risk of vitamin D deficiency due to ... Read More
Positive opinion for Amryt’s Filsuvez
The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended approval of Amryt ... Read More
10 years of Cure EB
We can't quite believe it, but for an incredible 10 years (!) now we have been working ... Read More
Mission EB is underway!
In collaboration with Great Ormond Street Hospital and Children's Charity (GOSH) and the NIHR we are so ... Read More
We walked on the wild side!
Thank you to everyone who came to or supported the Walk On The Wild Side event at ... Read More
Cure EB researcher Prof. Alain Hovnanian wins Scientific Award
We are hugely proud that the work of Professor Alain Hovnanian, one of the primary researchers on ... Read More
Jodie Comer supports Cure EB at BGC Charity Day
Jodie Comer was on hand (or at least, on zoom!) on 11th September this year to represent ... Read More
EB World Congress 2020
The first global congress on Epidermolysis Bullosa took place on 19-23 January, in London ... Read More
Skin Disease Researchers Win Renewed Grants
The National Institutes of Health 21st Century Cures Act awarded an $800,000 grant to researchers at the ... Read More
Butterfly Run and Family Day 2019
We had a fabulous day yesterday for our Butterfly Run 2019. Thank you everyone for coming and ... Read More
2019 Silver Butterfly Dinner returns to RIBA
Our Silver Butterfly Dinner raised over £310,000 this year, held once again at the beautiful Royal Institute ... Read More
Butterfly Brunch Club in Conversation with Mishal Husain and Hadley Freeman
Cure EB supporters enjoyed lunch with fizz and fascinating conversation in the stunning setting of the Zaha ... Read More
Cure EB joins consortium to fund anti-fibrotic treatment
We're pleased to announce that Cure EB is joining three other EB charities to fund the clinical ... Read More
Sun and fun at the Cure EB Butterfly Run 2018
Sun and fun at the Cure EB Butterfly Run and Family Day! Such a beautiful course at ... Read More
Researchers discover cause of aggressive skin cancer in RDEB
Scientists at the Sidney Kimmel Cancer Center at Jefferson University have discovered the cause of aggressive skin ... Read More
Sohana in BBC Three’s ‘Me & My Butterfly Skin’
Sohana talks through what EB is like as a teenager in BBC Three’s Living Differently series ... Read More
First Patient Dosed with Dystrophic Epidermolysis Bullosa Treatment, KB103
Krystal Biotech have announced that the first patient has been dosed in the Phase 1/2 clinical trial ... Read More
CU Anschutz scientists awarded $3.8 million Department of Defense grant
In 2016, together with two other US based medical research charities, we funded the EB iPS Cell ... Read More
‘Butterfly child’ given life-saving skin
A seven year old boy with Junctional Epidermolysis Bullosa child received genetically modified skin grafts and almost ... Read More
Fantastic GFI Charity Day 2017
What a fantastic day we had at the GFI Charity Day this year, thank you to our ... Read More
Parallel London & Family Day 2017
Thank you and well done to all the families that took part in Parallel London's 100m, 1k, ... Read More
10K runners cross the finish line
Congratulations to all of our runners at the Vitality 10K in London this weekend! ... Read More
RIBA shines once again for Silver Butterfly Dinner 2017
Thank you to everyone that joined us for our 2017 Silver Butterfly Dinner, again hosted in the ... Read More
Cadogan Hall Concert
Thank you to the London International Orchestra, whose 30th Anniversary concert was given in support of Sohana ... Read More
BBC News – The promise of gene editing
Sharmila Nikapota, the mother of a child with a rare genetic disorder, has high hopes for gene ... Read More
Two NEW projects funded!
Lenticol -M Mesenchymal Stromal Cells engineered to express Collagen VII for the treatment of RDEB Dr Waseem ... Read More
Mirror Newspaper – Schoolgirl’s skin blisters and burns if mum hugs her
http://www.mirror.co.uk/news/real-life-stories/schoolgirls-skin-blisters-burns-mum-6491436 ... Read More
The Silver Butterfly Dinner 2015 raised over £522,000
The Silver Butterfly Dinner hosted and organised by the Sohana Research Fund at RIBA on 14 May ... Read More
Guardian Newspaper – My fight to save my daughter’s skin
http://www.theguardian.com/lifeandstyle/2014/nov/22/our-fight-to-save-sohana-research-fund ... Read More
Sohana Research Fund to be part of BGC Charity Day 2014
Every year, BGC Partners and Cantor Fitzgerald, commemorate their friends and colleagues who died on September 11, ... Read More
SRF supported by ICAP Charity Day 2012
SRF chosen to benefit from ICAP Charity Day 5 December 2012 ... Read More