EB Priority Setting Partnership
Cure EB was happy to partner on an EB research priority setting project with the James Lind Alliance and several EB charities....
17 June, 2025
Research
28 February, 2025
Rare Disease Day 2025
It's Rare Disease Day! Plus Krystal's Vyjuvek gets a positive opinion from the CHMP!...
17 January, 2025
Cure EB Family Forum – losartan in RDEB
[vc_row css_animation="" row_type="row" use_row_as_full_screen_section="no" type="full_width" angled_section="no" text_align="left" background_image_as_pattern="without_pattern"][vc_column][vc_column_text css=""]It was wonderful to have Prof Dimitra Kiritsi, Professor of Dermatology at the Aristotle University of Thessaloniki at our Family Forum online last month. As part of her interesting and informative talk, Dimitra outlined the reasons researchers decided...
28 March, 2024
Research Evening at the Royal Institution
We were delighted to welcome donors, researchers, clinicians and EB families to our Research Evening at the Royal Institution in London...
20 December, 2023
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 bullosa (JEB) in patients 6 months and older. This follows approval of the treatment by the European Commission in June 2022, as well as NICE's recommendation for use...
16 October, 2023
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 European Academy of Dermatology and Venerology (EADV) Congress last week....
21 August, 2023
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 wounds in junctional and dystrophic epidermolysis bullosa in the UK....
22 May, 2023
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 (DEB), both recessive and dominant, aged 6 months or over....
12 September, 2022
Filsuvez approved in Great Britain
The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has granted marketing authorization approval for Amryt Pharma’s Filsuvez, a topical gel for the treatment of partial thickness wounds associated with dystrophic and junctional epidermolysis bullosa (EB). Marketing authorization approval is required before a medicine can...
25 July, 2022
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 trial is designed to enroll up to 20 patients with all four types of inherited EB - dystrophic EB, EB Simplex, Junctional EB and Kindler Syndrome - and will...