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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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People supporting each other in a healthcare setting

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.

1

Search Your Condition

Enter your health condition or diagnosis. Our smart search instantly finds relevant support organizations.

2

Explore Communities

Review detailed profiles of advocacy groups, including their mission, resources, and contact info.

3

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.

Bardet-Biedl Syndrome UK

Bardet-Biedl Syndrome UK

Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, and advancing education about BBS. BBS UK supports over 700 people diagnosed with BBS, along with their families and professionals involved in care and support. The organization offers various programs including advice services, clinics, conferences, support groups, and educational resources. It also engages in advocacy, research, and policy activities to improve health outcomes and understanding of BBS. Bardet-Biedl Syndrome UK (BBS UK) is a registered charity established in 1993, supporting individuals with Bardet-Biedl Syndrome, their families, and carers in the UK. It is a user-led organization represented by adults with BBS and parents of children with BBS. The organization's aims include preserving and protecting health, promoting welfare, advancing education about BBS, supporting over 700 people diagnosed with BBS, and fostering understanding, confidence, independence, self-advocacy, and social connections. BBS UK offers various programs such as advice services, clinics, conferences, support groups, educational booklets, newsletters, and fundraising activities. The organization also engages in advocacy, research, and policy work, maintains a website with extensive resources, and has a team of officers, trustees, and staff dedicated to its mission.

The Aarskog Foundation

The Aarskog Foundation

The Aarskog Foundation is a global alliance of people living with Aarskog Syndrome (AS) X-Linked inherited. The Aarskog Foundation brings together National and International Aarskog Syndrome patients from around the world to create a global alliance of patients and families faced with common challenges derived from the uniqueness of this RARE Genetic condition. Addressing Aarskog Syndrome is vital in order for it to be recognised as a disability across all governing bodies to ensure all Aarskog patients have access to the same resources as any other person. Patients living with Aarskog Syndrome come together through The Aarskog Foundation in a structured environment to create an Aarskog community and a voice through advocacy and exchange experiences. To this end we aim to unite, expand and put Aarskog Syndrome on the agenda of organisations and institutions both in the UK and across the world.

Pankind Australian Pancreatic Cancer Foundation

Pankind Australian Pancreatic Cancer Foundation

PanKind Australian Pancreatic Cancer Foundation is dedicated to improving outcomes for individuals affected by pancreatic cancer through groundbreaking research, compassionate support, and advocacy. Their mission is to triple survival rates by 2030 and enhance quality of life. They offer resources such as educational booklets, clinical trial information, and support services. The organization engages in advocacy, awareness campaigns, and provides support groups. They collaborate with healthcare professionals and have a focus on pancreatic cancer research, genetic testing, clinical trials, and patient support programs. They maintain a website with extensive resources and actively participate in policy and research initiatives. They also promote fundraising, community engagement, and partnerships to further their mission.

Cure Mito Foundation

Cure Mito Foundation

The Cure SURF1 Foundation was founded in 2018 by a group of families determined to fight for our children’s lives. Each of us has a young child diagnosed with SURF1 Leigh syndrome. Each of us has been told by doctors that there is no treatment, no cure, and no hope. And each of us has refused to accept this as a final answer. ​ In 2021, after successfully blazing the trail for SURF1 gene therapy at UTSW we decided to expand our efforts and changed the name of our foundation from the Cure SURF1 Foundation to the Cure MITO Foundation. Our primary focus is advancing research towards a cure for Leigh syndrome and eventually for mitochondrial disease as a whole. A successful outcome will mean not only hope for our own children, but also life-saving treatments for future generations impacted by this disease.

European Tuberous Sclerosis Complex Association

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

Selbsthilfe Pankreaskarzinom

Selbsthilfe Pankreaskarzinom

Selbsthilfe Pankreaskarzinom is an organization providing resources, information, and support for individuals affected by pancreatic cancer. They offer downloadable brochures on various topics related to pancreatic cancer, including disease information, treatment options, patient rights, and complementary medicine. The organization aims to educate, support, and advocate for patients and their families, promoting awareness and understanding of pancreatic cancer. They also facilitate community engagement through events like World Pancreatic Cancer Day and provide contact information for assistance and inquiries.

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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