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UNSED, Union Nationale des Syndromes d'Ehlers-Danlos
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UNSED does not have a grant. However, we fund genetic research because not all genes are identified yet. SEDs are rare genetic diseases, orphan treatments. Connective tissue disorders: They are numerous, explained by a disruption of the immune system that attacks the connective tissues.

These constitute the structural base that holds together the body's cells - mainly proteins, collagen and elastin - resulting in multiple consequences on the skin, joints, bones, heart, blood vessels, arteries , cartilage, tendons, muscles, ligaments. "Dreaming alone is only a dream. Dreaming together becomes reality".

Your support will help to respond very actively to the urgent needs of the care of patients in different areas. It is to associate us on a national project with a short-term international medical impact (PNDS ...) UNSED also engages with children, with the project D'EMH, dedicated to the rights of hospitalized sick children. We have put together a booklet that answers the many questions that children ask about hospitalization, regardless of their illness or disability.

This booklet is offered by our association. We intervene in schools to educate all children about visible, invisible disabilities, wheelchairs, their rights as health users. UNIR is what will put words on our troubles Let's continue to smile to life...

https://unsed.org/pages/la-recherche/ndeg4-sed-comprendre-reparer.php

Lastest news from UNSED, Union Nationale des Syndromes d'Ehlers-Danlos

Des patients sans gènes !

Non, tous les gènes ne sont pas encore identifiés ! Oui il est primordial de le faire pour que l'errance diagnostic soit moindre, pour...