Helping patients find information when they are discovering their disease
Join our members in finding the resources and support you need to navigate your health journey.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Brainstrust
Brainstrust is a brain tumour charity dedicated to providing support, information, and resources for individuals affected by brain tumours. They offer patient guides, practical help, support videos, and campaigns to raise awareness and improve quality of life for patients and their families. The organization also engages in research, collaborates with healthcare professionals, and advocates for better treatment options. Their services include a 24/7 helpline, educational resources, support groups, and community events. Brainstrust aims to empower patients with knowledge and confidence to navigate their diagnosis and treatment journey, reduce fear and isolation, and promote research and policy change to improve outcomes.
Project Sebastian
Project Sebastian is a patient advocacy organization that provides support groups, individualized therapies, education, and resources to families affected by rare diseases. Its mission centers on compassion, education, and advocacy, aiming to empower the rare disease community through group support meetings, counseling, and access to resources. The organization emphasizes building a network of professionals, scientists, educators, caregivers, and families, with the goal of funding vital projects and increasing awareness for rare diseases. It engages in ambassador initiatives, Rare Disease Day activities, and partnerships with charity organizations. Programs highlighted include caregiver and patient support, educational resources, and community events. The organization lists several charity partners and resources in its materials and maintains an online presence with a resources page, support groups, and fundraising efforts (donations). The main activity appears to be community-based support and education for all families affected by rare diseases, primarily operating from the United States (Valencia, California address).
Barth Syndrome Foundation
The Barth Syndrome Foundation (BSF) is the only organization dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. BSF provides vital information, credible resources, and supports research efforts to improve diagnosis, treatment, and quality of life for individuals with Barth syndrome. The foundation also advocates for regulatory approval of therapies, collaborates with healthcare providers and researchers, and offers community support and educational programs. The Barth Syndrome Foundation (BSF) is dedicated to saving lives around the world through education, advances in treatments, and finding a cure for Barth syndrome, a life-threatening genetic, multi-system disorder mostly affecting males. The foundation provides vital information, credible resources, and supports research initiatives. It engages in advocacy activities, offers patient and clinician resources, and fosters community support. The organization is involved in clinical trials, research funding, and policy advocacy. It maintains a comprehensive website with sections on research, family resources, diagnosis, and community engagement. The foundation also collaborates with international affiliates, partners, and medical advisory boards. It is committed to improving diagnosis, treatment, and quality of life for individuals with Barth syndrome and their families.
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.
Cancer Research UK
Cancer Research UK is a leading cancer research and awareness organization based in the United Kingdom. It focuses on cancer prevention, early diagnosis, treatment, and support for patients. The organization conducts and funds research, provides educational resources, and advocates for policy changes to improve cancer outcomes. It operates in multiple countries, including the UK, and collaborates with healthcare professionals, researchers, and policymakers. The organization offers a wide range of programs, including public awareness campaigns, patient support services, and professional education. It actively engages in policy advocacy and regulatory discussions related to cancer research and treatment. The organization maintains a strong online presence through its website and social media channels, providing accessible information and resources to the public and healthcare providers.
The Ehlers Danlos Society
The Ehlers Danlos Society is a global organization dedicated to improving the lives of people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society provides education, research funding, clinical resources, and advocacy to support patients, families, and healthcare professionals. It aims to increase awareness, promote diagnosis, and advance research to find better treatments and ultimately a cure for EDS and HSD. The society also offers support groups, patient stories, and community engagement initiatives to foster a strong network of individuals affected by these connective tissue disorders. The Ehlers Danlos Society is a patient advocacy organization dedicated to improving the lives of individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization focuses on research, education, support, and advocacy to raise awareness and improve diagnosis and management of these connective tissue disorders. It offers patient support programs, educational resources, and promotes research collaborations. The Society also engages in policy advocacy and provides a platform for patient stories and community engagement. It operates globally, with a focus on patient-centered initiatives, and collaborates with healthcare professionals, researchers, and other organizations to advance understanding and treatment of EDS and HSD.