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Sparkly lights against a black background with phrase '2022 in review' overlaid

2022 in Review

As 2022 draws to a close, we are taking a moment to reflect on this year.
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Sohana with the words 'Thank you' overlaid

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
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Family Day – Community, Fun & the Latest Research

Family Day – Community, Fun & the Latest Research

After a break due to the pandemic, it was wonderful to be back together at the Queen
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The Butterfly Run – the results are in!

The Butterfly Run – the results are in!

Wow! What a fantastic day we had on Sunday. The sun shone and so did the smiles
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Filsuvez approved in Great Britain

Filsuvez approved in Great Britain

The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has granted marketing authorization approval for Amryt Pharma’s
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InMed expands Phase II cannabinol trial to include adolescents

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
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Krystal seeks FDA approval of B-VEC for DEB

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
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Silver Butterfly Dinner flyer

Butterfly Dinner 2022 raises £352,000!

We are absolutely thrilled that our Silver Butterfly Dinner at RIBA raised £352,000 for EB research. You
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European Commission Approves Filsuvez for DEB and JEB

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
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Bristol MetaSkin collaboration

Bristol MetaSkin collaboration

Researchers at the University of Bristol are investigating the design and development of artificial skin to benefit
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Castle Creek Biosciences raises US $112.8 million

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
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Tetra Bio-Pharma’s PPP004 receives orphan drug status

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
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Positive Phase II results for PTR-01

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
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Vitamin D in RDEB

Vitamin D in RDEB

Paediatric patients with recessive dystrophic epidermolysis bullosa (RDEB) are at risk of vitamin D deficiency due to
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Positive opinion for Amryt’s Filsuvez

Positive opinion for Amryt’s Filsuvez

The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended approval of Amryt
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Icons with statements saying £10m raised, 24 projects funded and 1st treatment in delivery

10 years of Cure EB

We can't quite believe it, but for an incredible 10 years (!) now we have been working
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Mission EB is underway!

Mission EB is underway!

In collaboration with Great Ormond Street Hospital and Children's Charity (GOSH) and the NIHR we are so
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Giraffe in silhouette against sunet with title 'Walk on the wild side at London Zoo' overlaid

We walked on the wild side!

Thank you to everyone who came to or supported the Walk On The Wild Side event at
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Cure EB researcher Prof. Alain Hovnanian wins Scientific Award

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
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Multiple celebrity faces in a zoom call with BGC Virtual charity Day logo

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
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EB World Congress 2020

EB World Congress 2020

The first global congress on Epidermolysis Bullosa took place on 19-23 January, in London.
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Skin Disease Researchers Win Renewed Grants

Skin Disease Researchers Win Renewed Grants

The National Institutes of Health 21st Century Cures Act awarded an $800,000 grant to researchers at the
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Butterfly Run and Family Day 2019

Butterfly Run and Family Day 2019

We had a fabulous day yesterday for our Butterfly Run 2019. Thank you everyone for coming and
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Jason Isaacs and James leading auction in front of wooden panelled backdrop

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
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Seated panel of three women laughing

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
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Cure EB joins consortium to fund anti-fibrotic treatment

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
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Cure EB Butterfly Run t-shirt and medal

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
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Researchers discover cause of aggressive skin cancer in RDEB

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
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Me & My Butterfly Skin film title

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.
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First Patient Dosed with Dystrophic Epidermolysis Bullosa Treatment, KB103

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
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CU Anschutz scientists awarded $3.8 million Department of Defense grant

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
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'Butterfly child' given life-saving skin

‘Butterfly child’ given life-saving skin

A seven year old boy with Junctional Epidermolysis Bullosa child received genetically modified skin grafts and almost
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Cure Eb Patron Damian Lewis on phone at GFI Office

Fantastic GFI Charity Day 2017

What a fantastic day we had at the GFI Charity Day this year, thank you to our
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Parallel London & Family Day 2017

Parallel London & Family Day 2017

Thank you and well done to all the families that took part in Parallel London's 100m, 1k,
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Group of runners standing together with their medals

10K runners cross the finish line

Congratulations to all of our runners at the Vitality 10K in London this weekend!
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Dinner guests smiling while sat at table decorated with pink orchid

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
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Cadogan Hall Concert

Cadogan Hall Concert

Thank you to the London International Orchestra, whose 30th Anniversary concert was given in support of Sohana
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Sohana speaks at #WEDay UK

Sohana speaks at #WEDay UK

Sohana speaking at #WEDay UK on 9 March 2016
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BBC News - The promise of gene editing

BBC News – The promise of gene editing

Sharmila Nikapota, the mother of a child with a rare genetic disorder, has high hopes for gene
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UCL Great Ormond Street Institute of Child Health logo

Two NEW projects funded!

Lenticol -M Mesenchymal Stromal Cells engineered to express Collagen VII for the treatment of RDEB Dr Waseem
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Mirror Newspaper - Schoolgirl's skin blisters and burns if mum hugs her

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
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The Silver Butterfly Dinner 2015 raised over £522,000

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
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Guardian Newspaper - My fight to save my daughter’s skin

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
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2014 BGC Charity Day Logo

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,
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BBC News - The girl whose skin never heals

BBC News – The girl whose skin never heals

http://www.bbc.co.uk/news/health-24902658
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ICAP logo

SRF supported by ICAP Charity Day 2012

SRF chosen to benefit from ICAP Charity Day 5 December 2012
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