EB-Suomi

18/10/2025

TLC kanavalta tulee parhaillaan ohjelma EB:stä.

30/04/2025

Tätä kannattaa meidän seurata.

Exciting news! The European Commission (EC) has approved VYJUVEK®, the first-ever topical gene therapy developed to heal chronic wounds in patients with Dystrophic Epidermolysis Bullosa (DEB), for marketing authorization in all European Union member states, as well as Iceland, Norway and Liechtenstein!

VYJUVEK is designed to address the genetic root cause of DEB by delivering functional copies of the human COL7A1 gene to provide wound healing and sustained functional type VII collagen protein expression with redosing. VYJUVEK is the first corrective medicine approved in Europe for the treatment of DEB.

EBRP invested in Krystal Biotech by way of a private placement after Krystal’s Biotech’s initial public offering in 2017 using EBRP’s Venture Philanthropy model.

VYJUVEK has been available in the U.S. for use by healthcare professionals in a clinic or at home since 2023. This development brings tremendous hope to the DEB community worldwide.

EBRP remains at the forefront of funding critical research and accelerating treatments like this to help those suffering from EB—we are committed to campaigning vigorously to accelerate global access to this life-changing treatment. 🔬🧬🌎

Your continued support of EBRP makes this vital work possible. Thank you for standing with us as we push for faster access to breakthrough treatments for the EB community worldwide! 🦋💙🙏

26/06/2024

Perjantaihin 28.6. saakka ehtii vielä vastata EB-kyselyyn! 👇🏻

⏰ Don't miss out! ⏰
This is the LAST CHANCE to have your say on EB research by taking part in the survey.

It only takes 12 minutes to be a part of shaping the future of EB research and complete the survey.

We are asking everyone involved in EB – patients, their friends and families, carers and healthcare professionals – to let us know what questions most need answering to improve care and treatment for EB. Please share the survey with them!

Survey closes Friday 28th June ‼️‼️‼️⬇️⬇️⬇️
https://emea.focusvision.com/survey/selfserve/2cc7/240502?list=1 #?

DEBRA UK