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.
Why PatientGroups.ai?
Verified Communities
We vet every organization to ensure you find safe, legitimate support networks and advocacy groups.
Global Reach
Access support groups from around the world, or find local communities near you that speak your language.
Patient-Centric
Built with patients in mind, prioritizing your privacy, ease of use, and meaningful connections.
How It Works
Finding the right support group is simple. We've made it easy for you.
Search Your Condition
Enter your health condition or diagnosis. Our smart search instantly finds relevant support organizations.
Explore Communities
Review detailed profiles of advocacy groups, including their mission, resources, and contact info.
Connect & Get Support
Reach out directly to join communities, access resources, or get involved with groups that feel right for you.
Featured Communities
Browse our curated list of patient advocacy groups and support networks making a difference today.
Epilepsy Action
Find out what it means to be a national charity committed to supporting a better life for everyone affected by epilepsy.
Grace Kelly Childhood Cancer Trust
The Grace Kelly Childhood Cancer Trust was founded in 2016 in memory of four-year-old Grace. We fund research into rare and aggressive childhood cancers, educate families and clinicians about the signs and symptoms of childhood cancer and produce information booklets to explain to parents and children about the treatments they are facing. Locally, we provide financial, practical, and emotional support to families through our support service. Giving families a listening ear at the time when they need it most. Because no family should fight childhood cancer alone.
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.
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Cancer Support France
Cancer Support France is a patient advocacy organization dedicated to providing support, information, and advocacy for individuals affected by cancer in France. They offer a helpline, support groups, educational resources, and community activities to improve the quality of life for cancer patients and their families. The organization collaborates with healthcare providers, researchers, and other charities to promote cancer awareness, support research, and influence health policies. They operate nationwide across France, engaging in advocacy campaigns, patient education initiatives, and volunteer programs. Their services include emotional support, practical assistance, and information dissemination to empower patients and caregivers. Cancer Support France is a national organization dedicated to providing support, information, and advocacy for cancer patients and their families in France. It offers a range of support services, including support groups, educational resources, and community activities. The organization collaborates with international cancer organizations and participates in policy advocacy to improve cancer care and patient quality of life. It maintains a network of local associations across France, facilitating access to support and information at the regional level. The organization also engages in public awareness campaigns and provides resources for cancer prevention, early detection, and survivorship. Cancer Support France is committed to fostering a supportive community for those affected by cancer and promoting research and policy initiatives to advance cancer care.
Stiff Person Syndrome Support and Charity
<p>This site is solely for the support of those suffering from Stiff Person Syndrome (SPS). Family and friends of sufferers are also welcome to the same support. The site may also be of interest to caregivers, care professionals, researchers (together with advocates for the condition) and the general public.</p><p>------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------</p> Stiff Person Syndrome Support Group and Charity, founded in 1998 by Liz Blows, is a UK-based not-for-profit organization dedicated to supporting individuals with Stiff Person Syndrome (SPS). The organization provides information, advocacy, support services, and promotes research into SPS. It aims to raise awareness of SPS, offer patient support, and facilitate research collaborations. The charity operates in the UK and Ireland, with a physical address at 75 Normandy Avenue, Beverley, East Yorkshire, HU17 8PF. It has a charity registration number 1099206. The organization engages in various activities including hosting conferences, supporting patient stories, and maintaining an online presence through social media platforms such as Facebook, Twitter, Instagram, and LinkedIn. The organization also provides educational resources, supports research publications, and collaborates with medical and research institutions. Key personnel include Liz Blows (Chair). The charity is actively involved in policy advocacy, research funding, and community engagement to improve the lives of SPS patients.
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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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