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
Rareminds
Rareminds is a registered charity in England and Wales, no. 1205120. Its mission is to provide affordable, timely access to highly specialised counselling for the rare disease community, and campaign for recognition of the importance of specialist mental health support by informing policy, practice, and promoting standards of excellence. It is partially funded by donations and sponsorship via unrestricted grants. Rareminds operates independently of companies and does not endorse any products. It does not have editorial or clinical control over content, activities, or service provision. The organization supports emotional wellbeing, counselling, training, consultancy, and awareness activities for the rare disease community.
The Lymphoedema Support Network
The Lymphoedema Support Network (LSN) is a registered charity and the UK’s national patient support charity for those living with or affected by lymphoedema.’ The Lymphoedema Support Network takes the lead role in supporting and empowering people with lymphoedema by providing a high standard of information and promoting self-help. Since its inception in 1991, when there was very little information or help available for patients, the LSN has evolved into an independent and influential charity. As a charity run by people with lymphoedema, the LSN has a real understanding of the lived experience of the condition which it uses to inform its work.
IPOPI
IPOPI is an international non-profit association registered in Belgium; it aims to improve the lives of people with primary immunodeficiencies (PIDs) worldwide. The organization operates through a strategic plan and network of member organizations to advocate for early diagnosis and optimal care, PID awareness, and stakeholder collaboration. IPOPI conducts work on PID-related awareness, early diagnosis and care, NMO support within NMOs, and provides patient-focused resources and tools (Leaflets, publications, and the PID Life Index). It maintains corporate sponsor relationships and programmatic initiatives such as early diagnosis and care, PID awareness, and NMO-related support. IPOPI (International Patient Organisation for Primary Immunodeficiency) is an organization dedicated to improving the lives of patients with primary immunodeficiencies worldwide. It engages in advocacy, education, and support activities, collaborates with stakeholders, and promotes awareness and early diagnosis of PIDs. IPOPI maintains a network of experts, produces educational materials such as leaflets, and is involved in policy and research initiatives. The organization is based in Belgium, with a focus on global impact, and has partnerships with corporate sponsors. It provides resources for patients and healthcare professionals, and actively participates in policy and clinical development activities.
Cancer Support UK
<p>We provide practical and emotional support to people with cancer, during and after the treatment period.</p><p>We support people with all kinds of cancer across the UK. Our services are designed and delivered by people who have experienced cancer themselves – to improve the experience of others.</p> Cancer Support UK is a UK-based charity dedicated to supporting cancer patients and their families throughout the cancer journey. It emphasizes emotional and practical support, including free Cancer Coach programs (peer group support, digital learning, and Focus Forwards workshops) for adults who have completed cancer treatment. The organization offers Cancer Kits and workplace training, signposting, and educational resources, and invites donations and involvement through volunteering and referrals. The site notes impact such as helping 4,952 people in 2020 and highlights storytelling and shared experiences to raise awareness of its services. Core activities include running Cancer Coach programs (peer groups online or by phone, digital learning, and focused workshops), providing educational resources and materials (Cancer Types, Signposting, Resources), offering cancer-related patient support services, and broader fundraising and outreach efforts.
Anticancer Fund
The Anticancer Fund is dedicated to supporting research, raising awareness, and advocating for better cancer treatments. They produce scientific publications, support clinical research, and engage in policy and advocacy activities to improve outcomes for cancer patients. The organization also provides patient support resources and collaborates with various partners and stakeholders in the oncology community.
Its On The Ball
It's on the Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, information, support, and fundraising. The organization provides contact channels for enquiries and support (email info@itsontheball.org and phone 01603 511707) and operates from Norwich, Norfolk, United Kingdom. Core activities include awareness campaigns, patient support resources, fundraising for change, volunteering opportunities, and storytelling/community engagement through its site sections (Testicular Cancer resources, Get Involved, Stories, News). It's On The Ball is a UK-based registered charity (charity number 1155510) focused on testicular cancer awareness, education, and patient support. The organization describes itself as working to raise awareness of testicular cancer and the importance of monthly self-checks, deliver awareness talks to schools, colleges, businesses and organisations around East Anglia, provide patient education resources (leaflets and information), and fundraise to support patients through awareness campaigns, support packs, and grants. Core activities include awareness campaigns (Awareness), patient support (Support), and fundraising initiatives (Fundraising). The site emphasizes patient advocacy through stories, support resources, and community events, including BeerPush fundraising campaigns and other community events. The organization invites donations, volunteers, and corporate support and maintains an active newsletter and events calendar. The content reflects ongoing engagement with the public and communities to improve early detection and patient support related to testicular cancer.