Today is rare disease day – SSADH is ultra rare but also ultra active!

With only 12 known patients in Germany SSADH-deficiency is ultra rare. No one understands the disease, no one researches it, no one develops therapies. That was 3 years ago. Our association this year has published a review paper with scientific partners, carried out the first roundtable for clinicians and researchers and has now handed in the first application to an EU research call: The European joint programme on rare diseases. We´d like to reaffirm every rare disease group: be ultra active – you can achieve anything – but most importantly you can give hope to your patients!

Support us!

Kommentar verfassen

Trage deine Daten unten ein oder klicke ein Icon um dich einzuloggen:

Du kommentierst mit Deinem Abmelden /  Ändern )


Du kommentierst mit Deinem Twitter-Konto. Abmelden /  Ändern )


Du kommentierst mit Deinem Facebook-Konto. Abmelden /  Ändern )

Verbinde mit %s