Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Sturge Weber UK
Sturge Weber UK is dedicated to improving the lives of those affected by Sturge Weber Syndrome through providing strength and support, promoting awareness both publicly and professionally, promoting medical research, creating a supportive community, and creating a collaborative approach in the level of care individuals receive throughout their life.
Schinzel-Giedion Syndrome Foundation
The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world. The Schinzel-Giedion Syndrome Foundation is a UK registered charity established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). It aims to represent children with SGS and their families worldwide. The foundation is involved in research, advocacy, and support activities related to SGS. It collaborates with medical and scientific advisory boards, and maintains a registry and resources for families and professionals. The foundation also engages in public education, policy advocacy, and fundraising efforts. It provides educational materials, supports families, and promotes research into SGS, including genetic, clinical, and therapeutic studies. The foundation's activities include organizing conferences, publishing research, and fostering collaborations among researchers, clinicians, and families.
Action Parkinson asbl
Action Parkinson asbl is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, support services, and advocacy activities to improve the quality of life for patients. It offers patient education resources, support groups, and organizes activities and events to raise awareness and promote research. The organization collaborates with healthcare professionals, researchers, and other stakeholders to advance understanding and treatment of Parkinson's disease. It maintains a website with comprehensive information on symptoms, causes, diagnosis, and treatment options, and actively engages in policy advocacy and community outreach. Action Parkinson is a patient advocacy organization based in Brussels, Belgium, dedicated to supporting individuals with Parkinson's disease. The organization provides information, advocacy, and support services for patients and their families. It promotes awareness of Parkinson's disease, offers educational resources, and facilitates multidisciplinary care involving neurologists, physiotherapists, speech therapists, occupational therapists, psychologists, social workers, and pharmacists. The organization collaborates with various partners, including healthcare providers and community groups, to improve the quality of life for those affected. It engages in advocacy activities to influence health policies and supports research initiatives related to Parkinson's disease. The organization maintains a website, social media presence, and publishes reports and brochures to inform the public and patients. It was established in 2019 and operates primarily in Belgium, with a physical headquarters in Brussels and activities in Ixelles.
Myrovlytis Trust
The Myrovlytis Trust is a charity founded in 2007 to transform the outlook for rare conditions. With an initial focus on Birt-Hogg-Dubé Syndrome and osteosarcoma, the trust strategically funds research directed towards new treatments. We want to ensure that patients gain access to the same state-of-the-art technologies, breakthroughs and therapies as those with more common disease. Driving research, providing support and improving outcomes for patients and their families affected by rare conditions
Glaucoma UK
Glaucoma UK is a charity dedicated to providing help and support to everyone living with glaucoma. They offer a helpline, support groups, a buddy scheme, and free resources like eye drop dispensing aids, booklets, and posters. The organization also funds sight-saving research into the detection, management, and treatment of glaucoma, and runs awareness campaigns like Glaucoma Awareness Week. They engage patients through initiatives like the Glaucoma Patient Voice Study to shape future care. Glaucoma UK is the operating name of the International Glaucoma Association. Glaucoma UK is the operating name of the International Glaucoma Association, a charity registered in England & Wales (No 274681) and in Scotland (No SC041550). It is dedicated to supporting people with glaucoma through information, support services, research funding, and advocacy. The organization provides educational resources, support groups, a helpline, and funds research projects. It also offers free resources such as booklets, posters, and dispensing aids to help patients manage their condition. Glaucoma UK actively engages in public awareness campaigns, promotes early diagnosis through routine eye tests, and collaborates with healthcare professionals and research institutions. The organization is committed to improving eye health and preventing sight loss from glaucoma. Glaucoma UK is a membership charity dedicated to ending preventable sight loss caused by glaucoma. They campaign to raise awareness for early detection and treatment, support individuals living with glaucoma by providing access to reliable help and resources, fund high-quality research into glaucoma prevention, diagnosis, treatment, and cure, and advocate for patients in policy, service development, and care delivery. The organization is governed by a Board of Trustees, including glaucoma specialists and individuals with firsthand experience of the condition. They operate a Clinical Advisory Panel of ophthalmology and optometry experts, and support research, patient support services, and public education initiatives. Their values include trust, ambition, determination, compassion, inclusion, integrity, collaboration, and empowerment. They have a registered office in Ashford, Kent, UK, and are registered charities in England & Wales and Scotland.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.