Find Your Patient Support Community

MedicAlert

MedicAlert Foundation is a registered charity: 233705. It provides medical identification services, including emergency help lines, ID bracelets, and related support for individuals with medical conditions. The organization offers membership services, educational resources, and support for patients and their families. It collaborates with healthcare providers and emergency services to ensure rapid response in medical emergencies. The foundation also engages in advocacy for patient safety and awareness, and maintains a website with comprehensive information and resources. MedicAlert Foundation is a registered charity: 233705. It provides medical ID jewelry and services to help ensure vital health information is instantly available in emergencies. The organization offers membership services, protection programmes, and support for individuals with medical conditions or allergies. It collaborates with emergency services, healthcare professionals, and partners such as NHS, Lions, and Fundraising Regulator. The charity aims to improve safety and confidence for vulnerable populations, including those with dementia, autoimmune diseases, allergies, and other medical conditions. It maintains a website with educational resources, membership options, and donation opportunities. The organization is involved in public awareness campaigns, member stories, and community engagement. It also offers the Herbert Protocol scheme for at-risk individuals, with data retention policies and privacy safeguards in place.

Arbeitskreis der Pankreatektomierten e. V.

The Arbeitskreis der Pankreatektomierten e. V. (AdP) is a self-help organization founded in 1976, dedicated to supporting patients with pancreatic diseases, especially pancreatic cancer. It aims to promote health and rehabilitation for those who have undergone partial or total pancreatectomy, as well as non-operated pancreatic disease patients. The organization provides current information, facilitates experience exchange, and conducts educational work. It has over 1,550 members and collaborates with medical professionals and organizations. The AdP offers support for diagnosis, therapy, and follow-up, and advocates for early detection and research in pancreatic diseases. It is based in Bonn, Germany, and is supported by the German Cancer Aid. The Arbeitskreis der Pankreatektomierten e. V., also known as ADP e.V., is a patient self-help organization based in Bonn, Germany. It focuses on supporting individuals who have undergone pancreatic surgery, providing resources, advocacy, and community support. The organization offers informational documents, support networks, and educational materials for patients and their families. It engages in activities such as maintaining a forum, hotline, and distributing downloadable resources. The ADP e.V. collaborates with medical professionals and other organizations to improve patient care and awareness of pancreatic diseases. Its activities include advocacy campaigns, patient education initiatives, and supporting research collaborations. The organization is committed to empowering patients through information and community engagement, aiming to improve quality of life and treatment outcomes for those affected by pancreatic conditions.

LHON Society

The LHON Society is a patient-led support group for LHON, a mitochondrial disease affecting the retina and optic nerve, causing loss of vision. It provides emotional support, educational resources, support groups, community activities, and research updates. The organization offers counselling services through RNIB and Macular Society, and maintains a network of support groups and community programs. It is registered with the Charity Commission for England & Wales (number 1157206). The society also engages in research activities, clinical trials, and partnerships with biotech and pharmaceutical companies. It has a presence on social media platforms including Facebook, Twitter, and LinkedIn.

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.

Huntington's Disease Youth Organization

HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us? HDYO offers resources, peer support, and connects young people impacted by Huntington's Disease globally. They provide educational materials, support groups, and advocacy initiatives to improve the lives of affected individuals and their families. The organization also engages in research support and collaborates with various partners to enhance awareness and support services.

World Pancreatic Cancer Coalition