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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Anthony Nolan
Anthony Nolan is a UK charity that saves lives through stem cell transplants. They recruit people to the stem cell register, conduct research into stem cell transplants, and provide support and information for patients and their families dealing with blood cancers and blood disorders. Their work includes influencing policy for change, raising awareness, and offering a wide range of educational and support resources.
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
Association for Glycogen Storage Disease (UK) Limited
We help individuals and families affected by Glycogen Storage Disease (GSD) by putting people in contact, providing information and support, publishing a magazine and holding conferences, workshops, courses and family events.
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.
The Myeloma, Lymphoma & Leukaemia Foundation of Barbados
<p>Originally founded in February 2002 as the Myeloma Foundation and Support Group of Barbados, we broadened our scope in May of that year to include Lymphoma and Leukaemia and became known as The Myeloma, Lymphoma and Leukaemia Foundation of Barbados. We are registered as Charity #579. The Foundation finds its genesis in the fact that the experiences and needs of persons afflicted with blood-related cancers are extremely complex and far more unique than those afflicted with more well-known cancers.</p><p>Our mission is to provide comprehensive support to persons suffering from Myeloma, Lymphoma, Leukaemia and other blood-related disorders. We are based in Barbados and therefore cater primarily to Barbadians, although all are welcome.</p><p>The Main Objectives of the Foundation include:</p><ul><li><strong>Support:</strong> To provide a support network for sufferers of blood-related cancers and their families.</li><li><strong>Lobbying:</strong> To act as an effective lobbying agent on behalf of such persons to influence government policy on matters pertaining to blood-related cancers.</li><li><strong>Education:</strong> To educate the Barbadian public about blood-related cancers.</li></ul>
Jeans for Genes
Jeans for Genes is the annual fundraising event for the genetic condition community. It organizes activities such as promoting fundraising events, providing educational materials, and supporting families affected by genetic conditions. The organization encourages participation through workplace, school, and community events, and offers resources like fundraising packs, wristbands, and promotional materials. It also engages with media and local press to raise awareness and supports fundraising through online shops, bank transfers, cheques, and digital platforms. The organization is involved in advocacy, education, and community support activities, aiming to fund research and support services for families affected by genetic conditions.