Description
The 2nd Rare Diseases Run, organized by SYNGAP Elternhilfe e.V and Laufen macht glücklich GbR, will take place from 28th February – 5th March 2023. 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 equally shared amongst 20 patient organizations representing different rare diseases to support their work.
Angelman e.V.
CDKL5 e.V.
CFC-Syndrom e.V.
Selbsthilfe EPP e.V. (erythropoetic Protoporphyria)
Fett – SOS e.V.(FAODs)
PRO RETINA e.V. – Bardet Biedl syndrome
Sirius e.V. (Smith-Magenis-Syndrome)
Syngap Elternhilfe e.V. (SYNGAP1 syndrome)
KCNQ2 e.V.
Noonan-Verein Schweiz
SCN2A Germany e.V.
5p-minus Syndrom e.V.
Hand in Hand gegen Tay-Sachs & Sandhoff e.V.
Alström Syndrom Initiative (BraNeWo gUG)
Tuberöse Sklerose e.V.
Dravet e.V.
KAT6 Foundation Austria
CHARGE Syndrom e.V.
Dup15q e.V.
Wir sind 22q e.V.
There are special offers for companies and schools to participate as a team. For schools the patient organizations are preparing information boxes which contain books, brochures, easy recipes, small experiments and visual material about rare diseases, disabilities and inclusion. The boxes can be borrowed by schools for free to be used during school projects.
The Freiburg Center for Rare Diseases is a partner of the Rare Diseases Run 2023 and will offer a 2-days event with presentations and a school run.
The Rare Diseases Run 2023 will be supported by athletes Natalie Geisenberger (World Champion and Olympic Champion Luge), Nils Frommhold (Triathlete and Olympia Champion), Filippo Laisa (Ultrarunner) and others also from Olympics and Paralympics.
Note: For subscription in English go via https://my.raceresult.com/226865/registration
Find the event program here.
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