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.
HLRCC Foundation
The HLRCC Foundation, also known as the Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) Family Alliance, is a patient advocacy organization dedicated to supporting individuals affected by HLRCC. The organization provides educational resources, patient support services, and advocates for research and awareness of HLRCC. It operates primarily in the United States and collaborates with other organizations. The organization is involved in research, clinical trials, and policy advocacy to improve patient outcomes and awareness. The HLRCC Foundation is dedicated to providing up-to-date information on Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), also known as Reed’s Syndrome. It aims to educate patients, support families impacted by HLRCC, and assist clinicians with current research, screening, and management strategies. The foundation promotes awareness, genetic testing, and early detection of kidney cancer associated with HLRCC. It collaborates with related organizations, supports research initiatives, and offers resources such as handbooks, videos, and community support groups. The foundation emphasizes the importance of knowledge, screening, and early intervention to improve patient outcomes.
Childhood Interstitial Lung Disease Foundation
The Child Lung Foundation is a charity supporting children affected by childhood Interstitial Lung Disease (chILD). Established in 2010, it provides resources, support groups, and promotes research development. The organization aims to improve diagnosis, treatment, and quality of life for children with chILD, and offers educational resources, patient support services, and advocacy activities. It collaborates with medical professionals, researchers, and patient families to advance understanding and care of rare pediatric lung diseases.
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Aclt
The African Caribbean Leukaemia Trust (ACLT) is dedicated to registering stem cell, blood, and organ donors, especially focusing on diversifying donor registers to include more Black heritage donors. They work in partnership with organizations like NHS Blood & Transplant, Anthony Nolan, and DKMS to encourage registration and donation. ACLT does not directly take donations but promotes registration drives, volunteer programs, fundraising, and sponsorship to support their mission of saving lives through donor registration. They also highlight the importance of blood and stem cell donations for patients of all ethnicities, with a particular emphasis on supporting patients of Black heritage who require closely matched donors. The organization is involved in advocacy, awareness campaigns, and community engagement to increase donor diversity and support patients with blood cancers and disorders.
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Pancare Foundation
Pancare Foundation supports Australians facing upper gastrointestinal (GI) cancers—including stomach, liver, pancreatic, oesophageal, and biliary cancers—providing support, information and resources to patients, carers and healthcare professionals.
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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