Classic stiff person syndrome
Synonyms: Classic SPS
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview.
Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http: //www.orphadata.org. Data version September 2023.
Newly diagnosed with
Classic stiff person syndrome?
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The mission of Meg's Miracles is to help raise funds and create awareness for Stiff Person Syndrome research at The Stiff Person Syndrome Center at Johns Hopkins' Department of Neurology so that one day each and every person affected by this debilitating disease will be able to get a better treatment and eventually be cured of this disease. In addition to raising awareness, we want to be a resource of support for patients and their families battling this condition empowering them with tools to create more effective patient advocacy. This is all accomplished by educating both patients and clinicians about the disease; reminding them that they are a team and work together to create the best possible patient outcomes.
The Stiff Person Syndrome Research Foundation
Our mission is to raise awareness of Stiff Person Syndrome (SPS), to support research for better treatments and a cure for SPS, while strengthening our community through education and collaboration.
Aicardi-Goutieres Syndrome Advocacy Association
AGSAA is a global coalition of deeply dedicated parent advocates working alongside clinicians, researchers, and scientists. We are united in our desire to improve the lives of individuals and families living with Aicardi-Goutières Syndrome and those yet to be diagnosed. Everything we do reflects a sense of urgency to rescue patient potential and preserve quality of life through accelerating research and providing timely emotional and educational support alongside evolving clinical care recommendations to affected families.
Moonshots for Unicorns
Curing single-gene disorders
COMBINEDBrain is a consortium for outcome measures and biomarkers for neurodevelopmental disorders. We are collaborating to cure rare, non-verbal brain disorders.
For a list of clinical trials in this disease area, please click here.