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 Use Phormulate?
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.
Action for XP
Action for XP is a UK-registered charity focused on Xeroderma pigmentosum (XP). The organization provides patient and family support, awareness, education, resources, and advocacy related to XP. It offers project-based initiatives and several support and information hubs to assist people affected by XP, including Project Breakaway and Little Ted, as well as services such as Supporting You, the Action Advice Hub, and the Schools Hub. The charity aims to connect the XP community, raise awareness, share XP-related information, and provide accessible resources and outreach through its website and programs. Headquarters are listed in Aberdeenshire, United Kingdom, with charity registration details noted (Charity No SC045465). Action for XP is a charity dedicated to supporting individuals and families affected by Xeroderma Pigmentosum (XP). The organization operates across the UK and internationally, providing free services such as UV protection guidance, protective equipment, counselling, and family support. They organize community events, awareness campaigns, and collaborate with medical professionals and industry partners to advance research and improve quality of life for those with XP. The charity also engages in educational initiatives, advocacy, and fundraising activities to sustain and expand their support network. They have a strong focus on patient-centered care, education, and raising awareness about XP and related rare genetic conditions.
AMMF
AMMF (The Alan Morement Memorial Fund) is a UK-based charity dedicated to supporting research, raising awareness, and providing support for patients with cholangiocarcinoma (CCA). It develops comprehensive guidelines for diagnosis and treatment, funds research projects, and offers educational resources for patients and healthcare professionals. AMMF collaborates with international centers and advocacy groups to improve access to care and promote clinical research. The organization also engages in policy advocacy, hosts conferences, and maintains a network of advisors and experts in the field of liver and biliary cancers.
Huntington's Disease Youth Organization
HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us? HDYO offers resources, peer support, and connects young people impacted by Huntington's Disease globally. They provide educational materials, support groups, and advocacy initiatives to improve the lives of affected individuals and their families. The organization also engages in research support and collaborates with various partners to enhance awareness and support services.
African Caribbean Leukaemia Trust (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.
Parkinson's Europe
Parkinson's Europe is the only European Parkinson's umbrella organisation. We have been championing and working with the global Parkinson’s community for nearly 30 years. As the leading voice for Parkinson’s in Europe, we provide trusted information; advance and share good practices; raise awareness and improve understanding of the condition; and facilitate research collaboration. Our vision is that people with Parkinson's and their families have access to the highest standards of treatment, support and care they need to live a full and comfortable life.
Butterfly Thyroid Cancer Trust
Butterfly Thyroid Cancer Trust is the first national supporter of patients with Thyroid Cancer. As a group dedicated solely to the support of patients with Thyroid Cancer we can offer fellow thyroid cancer patients who wish to join us the following: Use of the dedicated helpline to speak to someone who has had the disease. E-mail and telephone contact with group members to share experiences A "buddy" to help you through the stages of surgery, Radioiodine treatment and follow up Access to reliable up-to-date written information about the disease Access to a group member in clinic at the Northern Centre for Cancer Care (NCCC), Freeman Hospital
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.
Start Your Journey
Take the first step toward connection and support. Search for patient groups that match your needs today.
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