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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Timothy Syndrome Alliance
Our mission is to improve the diagnosis, treatment and care of children with Timothy Syndrome, and to support the families of those diagnosed. Timothy Syndrome Alliance (TSA) is a charity dedicated to improving the diagnosis, treatment, and care of children with Timothy Syndrome and supporting their families. It aims to raise awareness, enhance scientific understanding, and reduce family isolation through community support, advocacy, and research initiatives. TSA is run entirely by parents and volunteers, and is NGO Source certified as a 501(c)(3) organization. It operates globally with members across many countries, including the US, UK, and others. The organization offers programs such as family events, support groups, and educational resources, and engages in research and policy advocacy related to CACNA1C-related disorders.
Myeloma UK
Myeloma UK is a charity dedicated to improving the lives of people affected by myeloma through research, support, and education. It provides patient information, advocates for policy change, funds research, and offers support services including helplines, support groups, and educational resources. The organization collaborates with healthcare professionals and industry partners to enhance treatment and care for myeloma patients. It is involved in clinical trials, research publications, and maintains a website with extensive resources and community engagement initiatives. Myeloma UK is a registered charity No. SC026116, based at 22 Logie Mill, Beaverbank Business Park, Edinburgh, EH7 4HG, with contact number 0131 557 3332.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.
TEB Selbsthilfe Tumore und Erkrankungen der Bauchspeicheldrüse
The TEB Selbsthilfe is a non-profit organization founded in Baden-Württemberg, Germany, dedicated to supporting patients with tumors and diseases of the pancreas. It provides informational materials, brochures, patient support programs, advocacy activities, and educational resources. The organization collaborates with medical professionals, offers a helpline, regional groups, and participates in policy and research initiatives. It is supported by the Krebsverband Baden-Württemberg and is a founding member of the World Pancreatic Cancer Coalition. The organization aims to improve awareness, support, and research for pancreatic conditions.
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Cancer Support France
Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.
The FACS Syndrome Association
Welcome to our website. FACSA is a support group for families and children who have been affected by AEDs during pregnancy and have a diagnosis of FACS Syndrome (FVS)