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Helping patients find information when they are discovering their disease

Join our members in finding the resources and support you need to navigate your health journey.

1.
Discover Your Condition
Enter your specific health condition, like "diabetes" or "cancer," into our search bar to kickstart your journey to valuable resources and support.
2.
Explore Relevant Resources
Explore a curated list of patient groups, articles, and educational materials related to your condition.
3.
Connect with Support
Connect with patient communities and groups to find support and information for your condition.

Featured Support Groups

Connect with these highly rated patient advocacy groups that are making a difference in their communities

MEBO Research

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.

HLRCC Foundation

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.

VHL UK/Ireland

VHL UK/Ireland

VHL UK / Ireland aims to raise funds via fundraising and donations for research, provide information and support for those affected and raise awareness. Registered charity in England and Wales 1160381, and Ireland 20101039. Charity Trust No: CT54346.

Maggie's

Maggie's

Maggie's provides free cancer support and information in centres across the UK and online. They offer professional staff, help with money worries, support for friends and family, support groups, courses and workshops, and resources for managing emotions, practical challenges, symptoms and side effects, and social aspects of living with cancer. They also provide specific support for carers and those dealing with bereavement. Their services aim to help people live well with cancer. Maggie's is a cancer support organization providing free support services to individuals affected by cancer, including children, young people, and their families. They offer individual support, family support, support groups, psychology sessions, and signposting to other organizations. Their services are available at Maggie's centres across the UK and internationally. They also provide educational resources, advocacy activities, and community engagement. Maggie's is committed to supporting children and young people affected by cancer, offering tailored support and resources for teachers and group leaders. The organization is based in Glasgow, Scotland, and operates in multiple countries. It was established in 1995. Maggie's is a registered charity in Scotland with charity number SC024414.

Childhood Interstitial Lung Disease Foundation

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.

National Organization for Rare Disorders

National Organization for Rare Disorders

The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to the identification, treatment, and cure of rare diseases. It provides resources, support, and advocacy for patients, families, and healthcare professionals. NORD also promotes research, policy development, and education to improve the lives of those affected by rare conditions. The organization collaborates with medical centers, research institutions, and industry partners to advance understanding and treatment of rare diseases. NORD offers patient assistance programs, educational resources, and hosts events to connect the rare disease community.