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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.

PSC Support
PSC Support is the only UK patient organisation dedicated to improving the lives of people affected by primary sclerosing cholangitis (PSC) We provide patients and families with high-quality, accessible information and the support they need; we collaborate with healthcare providers to improve clinical care; we shape and fund critical research so that we can live in a world without PSC.

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.

Usher Syndrome Ireland
Usher Syndrome Ireland is a charity founded by people with Usher syndrome, for people with Usher syndrome. It aims to support, inform, empower, and build a community for those affected by Usher syndrome. The organization raises awareness, funds research, advocates for affected individuals, and creates a supportive community. It provides information, support, and advocacy for people with Usher syndrome and their families. Usher Syndrome Ireland is a patient organization dedicated to providing information, support, and resources for individuals and families affected by Usher syndrome. They offer educational materials, support services, and advocacy to improve quality of life and access to care. The organization collaborates with various health and social services to promote awareness and research. They maintain a website with extensive resources, including research news, patient registries, and community support programs. Their mission is to empower those affected by Usher syndrome through education, support, and advocacy, fostering a strong community and advancing research efforts.

Ellen MacArthur Cancer Trust
The Ellen MacArthur Cancer Trust is a national charity that inspires young people aged 8-24 to believe in a brighter future living through and beyond cancer.

Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.

Champ 1 Foundation
Our mission is to improve the lives of those affected by CHAMP1 through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.
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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