7 SEPTEMBER 2019 kl 11.00 i PARTILLE

Insamlat till forskning under 2017-2019: 325 176 kr

EB-LOPPET 2018 samlade in 90 086 kr (441 anmälda)

Tillsammans med DEBRA International (Den internationella EB-föreningen) och DEBRA Österrike hittade vi ett väldigt intressant forskningsprojekt som specialiserar sig RDEB (den varianten av EB som Natalie har). Det är med stor glädje och stolthet vi presenterar 2018 års donation. Stort tack till alla deltagare och sponsorer/välgörare som gjort detta möjligt!

SVERIGES FÖRSTA EB-LOPP 2017 samlade in 95 090 kr (329 anmälda).

Pengarna donerades till Dr. Tolars gene editing work via Sohana Research Foundation har nu bytt namn till Cure EB. Tack alla underbara sponsorer för att ni trodde på oss!

Forskningsprojektet: Hovnanian 7

[Project description]:


"People with RDEB (recessive dystrophic epidermolysis bullosa) lack the collagen 7 protein that acts as a glue between the outer, and the deeper, layers of skin, as a result of mutations in the collagen 7 gene (COL 7A1).

Because of this, they suffer chronic blistering and erosions of the skin, and there is currently no specific treatment available. This project aims to develop a new gene therapy treatment to correct the COL 7A1 mutations, thus restoring expression of the collagen 7 protein to the skin.

The project will use a combined editing-reprogramming approach suitable for clinical translation. Demonstrating proof-of-principle of this approach would create new opportunities for treatment of one of the most severe skin conditions in children and adults."


'Prof Alain Hovnanian acknowledges with deep gratitude the donation from EB-loppet, saying "On behalf of people with EB, I should like to express my warmest thanks to EB-loppet for raising funds to support this research.

Developing advanced therapies that target the underlying genetic cause has a very strong potential to reverse the disease burden, and making progress offers hope of treatments that will alleviate the disabling painful symptoms, and provide people with EB greater freedoms."

Swish: 1230206490

Bankgiro: 5149-9028


Organisationsnummer: 8025236-8778

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