Description
The 4th Rare Diseases Run, will take place from 24th February – 2nd March 2025. Initiated by the Syngap Elternhilfe e.V. in 2021, it is a virtual and inclusive sports event for everyone. No matter if you walk, run or roll. Choose your distance, your pace and your favorite route. Run to create awareness for your own rare disease or run to support other rare diseases. Choose your running package starting with the online option for 10€ only. Up to a premium package with a medal and shirt. Every package and every participant will contribute to a donation pot that will be shared amongst 33 patient organizations from 3 different countries representing different rare diseases to support their work.
5p-minus-Syndrom e.V.
Alpha1 Deutschland e.V.
Angelman e.V. Deutschland
Arbeitskreis Cornelia de Lange – Syndrom e.V.
CACNA1E International
CDKL5 Deutschland e.V.
CRPS Netzwerk gemeinsam stark e.V.
Dravet-Syndrom e.V.
DSCM e.V.
Dup15q e.V.
DupMECP2 – Lasst uns MDS heilen
Fett-SOS e.V.
FOP e.V.
FOXG1 Deutschland e.V.
Friedreich-Ataxie Förderverein e.V.
Hand in Hand gegen Tay-Sachs und Sandhoff in Deutschland e.V.
KAT6A Foundation Austria
Mastozystose Selbsthilfe Netzwerk e.V.
Möbius Syndrom Deutschland e.V.
Morbus Fabry Selbsthilfegruppe e.V.
MPN Netzwerk,
NF Kinder
Niemann-Pick Selbsthilfegruppe Deutschland e.V.
Noonan-Syndrom Schweiz
SCN2A Germany e.V.
Selbsthilfe EPP e.V.
Sirius e.V.
SSADH Defizit e.V.
STXBP1 e.V.
Syngap Elternhilfe e.V.
Tuberöse Sklerose Deutschland e.V.
Xia-Gibbs e.V.
ZNM – Zusammen Stark! e.V.
There are special offers for companies, associations and schools to participate as a team.
The Rare Diseases Run 2025 will be supported by celebreties. The patron of the RDR is Eva Luise Köhler.
Note: For subscription in English go via https://my.raceresult.com/319532/registration
The last RARE DISEASES RUN had over 4,000 participants and collected over 39,000 € in donations. This event was the biggest virtual run in Europe for rare diseases.
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