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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.
Myhre Syndrome Foundation
The Myhre Syndrome Foundation is a nonprofit organization dedicated to supporting individuals with Myhre syndrome, advancing research, and providing resources and community support. They organize conferences, webinars, and provide educational materials to improve understanding and management of the condition. The foundation also collaborates with clinicians, researchers, and advocacy groups to promote awareness and develop targeted therapies. Their activities include patient and family support, medical guidance, research funding, and community engagement.
Children & Young People's Cancer Association (CCLG)
CCLG - The Children & Young People's Cancer Association is a charity dedicated to supporting children, young people, and their families affected by cancer. They focus on research, early diagnosis, advocacy, education, and support services. They operate a wide range of programs including public awareness campaigns like Child Cancer Smart, fundraising initiatives, and professional guidance to improve cancer diagnosis and treatment in children and young people. They also lead research projects, collaborate with healthcare professionals, and influence policy to improve outcomes for young cancer patients. CCLG - The Children & Young People's Cancer Association is a registered charity in England, Wales, and Scotland dedicated to supporting children, young people, and their families affected by cancer. The organization provides information resources, advocacy, research, and support services. It operates from Leicester, UK, and has a focus on childhood and young people's cancers, including types such as leukemia, brain tumors, and other pediatric cancers. CCLG collaborates with medical research charities, offers educational materials, and engages in policy and advocacy activities to improve cancer care and outcomes for young patients.
Tuberous Sclerosis Association
The Tuberous Sclerosis Association (TSA) was launched in 1977 with a membership of 50 families and funds of just £25. We have grown from a round robin support letter to a professional organisation providing support to families affected by Tuberous Sclerosis Complex (TSC) across the UK. For our five year strategy of 2019-2023, our aim is to ‘REACH more people and drive more REseArCH.’ The TSA is a registered charity with three charitable objectives: To support individuals affected by TSC, together with their families or carers To encourage and support research into the causes and management of TSC To provide education and information We look to our past to retain our community spirit, but drive forward by pushing the boundaries of what a small and dedicated team is capable of achieving.
PCB Foundation
The PBC Foundation is the only UK organisation exclusively dedicated to providing support and information to those affected by PBC. PBC (Primary Biliary Cholangitis) is a long-term, auto-immune condition which affects the liver.
Muscle Help Foundation
The Muscle Help Foundation (MHF) is a registered charity dedicated to transforming the lives of children and young adults living with Muscular Dystrophy through the delivery of Muscle Dreams — unique, life-changing experiences that foster hope, joy, and community. Established to support individuals affected by muscular dystrophy, MHF organizes and funds a variety of programs including Muscle Dreams, community outreach, and support services. The organization collaborates with healthcare providers, research institutions, and corporate partners to advance research, advocacy, and patient support. MHF's mission is to deliver 657 Muscle Dreams across the UK, each representing a life-changing experience for every muscle in the human body, empowering beneficiaries and their families. The foundation actively engages in advocacy campaigns, educational initiatives, and partnerships to raise awareness and improve quality of life for those with muscular dystrophy. With a dedicated team of staff, volunteers, and trustees, MHF strives to be a leader in the muscular dystrophy community, fostering hope, resilience, and inclusion.