MSA leben
MSA Leben has been providing information and support for multisystem atrophy since 2019 and has been recognized as a non-profit organization (registered in the ZER at the BZSt) 2026. We address the care gap in the DACH region as a knowledge partner for research, medicine and those affected through online and offline moderated support structures.
About MSA leben
Target group(s)
People diagnosed with multisystem atrophy (MSA), their partners, relatives, family and friends (PAFFies) as well as medical professionals and research institutions.
Founding year
2019
Paid staff
0
Volunteers
4
Funding
Financing is currently provided primarily through private donations and is to be provided in future through project funding and passive fundraising. We are in the process of building up a sustainable financing structure.
Objectives
Our goal is to become the "single source of truth" for multisystem atrophy in German-speaking countries. We close the care gap through specialized advice (online and offline), promote personal exchange in groups and act as an advocate for those affected vis-à-vis research, medicine and politics. We combine resilient digital structures with direct, human support in order to sustainably improve the quality of life of those affected and to co-finance research projects in the long term.
Your support helps
... the development of a comprehensive support structure for people with an extremely rare disease. You will help us to create professional structures. These should offer orientation and support to those affected and their loved ones both in the digital space and in everyday analog life. We also want to give them a strong voice in the medical world.