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.
Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
The Leukodystrophy Charity
Alex, The Leukodystrophy Charity is all about delivering high quality support, advice, knowledge and care for those affected by one of the leukodystrophies. The majority of these conditions cause progressive neurodegeneration, are largely untreatable and sadly terminal, and those affected deal with many common factors. Some of the less rare leukodystrophies already have established and reputable support groups providing excellent resources for sufferers and we signpost to these organisations and endeavour to work in partnership where possible. However, many of the very rare leukodystrophies have no support organisation working for them – Alex TLC focuses on the similarities caused by these conditions, embracing all affected within a community of Tender Loving Care.
Glut1 Deficiency UK
Glut1 Deficiency UK is a non-profit family led charity dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of: Increasing awareness of Glut1 Deficiency Improved education of families and health professional in relation to Glut1 Deficiency Advocacy for families and patients impacted by Glut1 Deficiency Support and funding for Glut1 Deficiency research
Brain Tumour Research Campaign
Brain Tumour Research Campaign (BTRC) is a UK-based charity dedicated to funding and accelerating brain tumour research. Our mission is to improve outcomes for people affected by brain tumours by supporting high-quality research, raising awareness, and enabling collaboration among researchers, clinicians, patients, and supporters. We fund research grants and collaborations, publish research outputs, run campaigns and educational resources, and involve donors through fundraising and sponsorship to ensure that donations support research projects. The organization operates a Research program with collaborations and a publications portfolio that highlights papers, abstracts, posters, and presentations facilitated by its grants.
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.
European Cancer Patient Coalition
The European Cancer Patient Coalition (ECPC) is a patient-led organization dedicated to representing and advocating for cancer patients across Europe. Its core activities include policy advocacy, research support, patient education, and promoting access to quality cancer care. ECPC engages in policy development, collaborates with European institutions, and runs various campaigns to improve cancer outcomes. The organization also provides resources and support to patients and caregivers, and actively participates in European health initiatives and research projects. ECPC aims to empower patients, influence health policy, and ensure that patient perspectives are integrated into cancer care and research.
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