European Multisystem Atrophy Study Group
Guide and many useful information (DE)
Multiple System Atrophy Coalition (EN)
The Multiple System Atrophy (MSA) Coalition is a charitable organization with a 30-year history of devotion to improving the quality of life and building hope for people affected by MSA through a four-pillar mission:
– Providing patients and caregivers with trusted and compassionate emotional support
– Educating patients, care-partners and healthcare professionals with credible, critically important and relevant information
– Funding patient-centric collaborative research aimed at alleviating symptoms, slowing disease progression and discovering a cure
– Building a sense of community by connecting and unifying people affected by MSA.
US-based charity dedicated to supporting patients and their families, promoting the education of healthcare professionals, raising public awareness and promoting promising research results. Defeat MSA consists exclusively of a small group of volunteers and is also supported by medical professionals.
With extensive information. The activities of Defeat MSA benefit people all over the world.
Global Online Support Hub (EN)
International consortium of charities fighting against MSA.
German Facebook group for patients and relatives
Facebook group for patients only (EN)
German Facebook group with many useful tips (DE)
One of the most important books about MSA – very medical in English. Perhaps too complex for the simple patient. By Professor Gregor K. Wenning from Innsbruck (examined both of us) and Prof. Alessandra Fianculli.
Prof. Wenning is one of the world’s most committed and important researchers and experts on the disease. Give the book to your GP or neurologist, if you don’t want to read it yourself, you will profit from! Since 2013 whole 9333 downloads.
Waisen der Medizin, seltene Erkrankungen (DE)
„Waisen der Medizin“ is aimed at all people affected by “rare diseases”.
YOUNG ALLIANCE AGAINST MULTIPLE SYSTEM ATROPHY
A registered charitable association.
“We see a lot of potential in MSA-research: it can be a model system for other alpha-synucleopathies which don’t draw a lot of attention by the public or researchers.”
Useful helper from the USA