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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.
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.
MEBO Research
MEBO’s Mission is to initiate research into rare genetic metabolic diseases, particularly those resulting in systemic, difficult to control body malodor and halitosis, including, but not limited to, Trimethylaminuria. Studies such as the "Dynamics of the Gut Microbiota in Idiopathic Malodor Production" and "MEBO Metabolic Profiling" are ground-breaking studies which explore innovative insight into conditions of malodor and/or PATM.
MPN Voice
MPN Voice is a registered charity focused on supporting individuals with myeloproliferative neoplasms (MPNs). Their activities include providing information, raising awareness, supporting patients through various programs, conducting research, and advocating for the MPN community. They offer educational resources, patient support services, and organize events and forums. They also engage in clinical research and trials, provide patient stories and testimonials, and maintain a strong online presence through their website and social media channels. As a charity, they are under the auspices of Guy's and St Thomas' Foundation, with registered charity number 1160316. MPN Voice is a registered charity under the auspices of Guy's and St Thomas' Foundation. It supports patients with myeloproliferative neoplasms (MPNs) through advocacy, education, support groups, research, and awareness campaigns. The organization provides patient education resources, hosts forums and events, and collaborates with healthcare professionals and research institutions. MPN Voice also engages in policy advocacy, clinical trial support, and fundraising activities to improve patient outcomes and quality of life. It maintains a website with extensive information on MPNs, treatments, and living with the condition, and actively promotes community engagement and patient empowerment.
European Tuberous Sclerosis Complex Association
Established in 2012, ETSC is a federation of Tuberous Sclerosis Associations. ETSC believes in total “patient experience” and that interaction with all healthcare providers and relative agencies is paramount. Objectives • Increase knowledge and awareness on TSC • Promote implementation of European and International diagnostic criteria, surveillance and treatment guidelines • Stimulate research on TSC • Interest European and International organisations in the welfare of those with TSC and their families • Exchange information of mutual interest between associations. Aims • Total patient experience and interaction in each individual country with all healthcare providers and agencies • Uniting TSC Associations to ensure knowledge and surveillance on our rare disorder and orphan drugs are increased • Good working relationships with Pharma and the inclusion of representatives from National Organisations in information and education on Clinical trials and any new drugs being developed for use with our rare disease • Vigilance on protocols and new drugs
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees
Action Duchenne
UK charity supporting people with Duchenne muscular dystrophy and their families.
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.
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