Find Your Patient Support Community
Discover support groups and communities where people share experiences, answer questions, and help each other navigate life with your condition.
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Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
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Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
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.
Chromosome 18 Europe
Chromosome 18 Registry and Research Society (Europe) is a charitable organization (Charity Number SC040399) associated with the Chromosome 18 Registry and Research Society. It facilitates a European community for families, friends, and members affected by Chromosome 18-related conditions, coordinating governance through a Management Committee and communicating developments ahead of its Annual General Meeting. The event described on this page is an informal, family-friendly gathering at the Glasgow Science Centre intended to connect attendees, share experiences, and discuss the organisation’s future direction, with feedback invited ahead of the next AGM. The site notes an international component, including a visit by several families from the US Chromosome 18 Registry and Research Society to Scotland.
Avery's Hope
Avery's Hope is a nonprofit organization dedicated to supporting children and families affected by pediatric gastrointestinal (GI) disorders. They provide patient assistance programs, educational resources, support services, and organize community events to raise awareness and foster a supportive community for those impacted by rare pediatric GI conditions. The organization collaborates with medical professionals, researchers, and other advocacy groups to improve the quality of life for affected children and their families. Their initiatives include summer camps, art and yoga therapy programs, and fundraising events such as cycling and music festivals. Avery's Hope also advocates for policy changes and increased research funding to address unmet medical needs in pediatric GI health. Avery's Hope is a nonprofit organization dedicated to supporting individuals and families affected by rare diseases. They provide resources, advocacy, and support services to improve quality of life and access to care. The organization is based in New Hope, PA, and is a registered 501(c)(3). Their initiatives include patient support programs, educational resources, and community engagement. They collaborate with various partners and participate in advocacy activities to influence healthcare policies. Avery's Hope also offers programs such as the BrAvery Awards, BasiCare Plus, Healing Arts Program, and Summer in HOPE Day Camp. They maintain a presence on social media platforms and have a network of affiliated organizations. The organization is committed to transparency and community support.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
Fabry International Network
Since Fabry disease is a rare genetic disorder, and since there are thousands of rare diseases, it’s hard for individual patients and caregivers to be heard. Therefore, when striving for better care and cure for Fabry patients, we need them to join forces and speak out. That’s where FIN comes in: an independent and vibrant network of Fabry patient associations whose purpose is to collaborate, communicate and promote best practice to support those affected by Fabry disease. We back 60 patient organizations in 57 countries. We connect health professionals and we ally with industry partners. We envision a world where every single person affected by Fabry disease has the best quality of life possible through early diagnosis, treatment and cure. Our mission, therefore, is to empower Fabry patients all over the world. FIN is a non-profit organisation registered in The Netherlands. The administrative support is based in Belgium. The Board of Directors meet regularly either online or face-to-face. In addition, they hold regular meetings with the industry partners and medical advisors.
Anthony Nolan
Charity focused on recruiting volunteer bone marrow/stem cell donors, funding research into cell therapies, running fundraising events (marathons, treks, cycles), and matching donors with patients in urgent need of transplants. Emphasizes donor register sign-up via swab and public donation appeals.
The Power of Community
Navigating a health condition is easier when you have the right support. Here's what you can find.
Shared Experiences
Connect with people who truly understand what you're going through. Share your story in a safe, supportive environment.
Practical Information
Get real-world advice about managing your condition, navigating healthcare, and finding resources that actually help.
Emotional Support
Find comfort in a community that cares. Whether you need to vent, celebrate, or just feel heard, we're here.
Advocacy & Awareness
Many groups work to raise awareness, fund research, and improve care. Your voice can make a difference.
PatientGroups.co Podcast
Conversations with leaders, founders, and advocates driving change in the patient advocacy ecosystem.
Patient Group Spotlight: The Swallows with Chris Curtis
Featuring The Swallows
Chris Curtis shares his head and neck cancer journey, the mission behind The Swallows, and why patient-led support and access must improve.
Patient Group Spotlight: Burning Nights CRPS Support with Victoria Abbott-Fleming
Featuring Burning Nights CRPS Support
Victoria Abbott-Fleming shares her CRPS journey, the mission behind Burning Nights, and why patient voices must shape treatment and policy.
Patient Group Spotlight: The MVA Society & The Ultra-Rare Journey
Featuring MVA Society
A deep dive into the challenges and triumphs of Mosaic Variegated Aneuploidy advocacy with founder Jonathan Bracey.
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