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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
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.
International Prader-Willi Syndrome Organisation
Since 1991 IPWSO has supported national PWS associations, as well as people with PWS, their families and the professionals who work with them. Our vision is a world where people with PWS and their families receive the services and support they need to fulfil their potential and achieve their goals. We are working to achieve this goal by uniting the global PWS community to collectively find solutions to the challenges of the syndrome and to support and advocate for people with PWS and their families, PWS associations, and professionals who work with people with PWS.
Cystinosis Foundation UK
The Cystinosis Foundation UK aims to: Provide support. We aim to provide support to all diagnosed with cystinosis, their families and relatives. Provide information. We shall provide relevant, accessable and up to date information about the disorder, as well as advice on specialist sources of help for new symptoms developing in patients. Publish newsletters. Up to date newsletters containing relevant information for patients and supporters will be produced regularly. Organise or participate in conferences relevant to cystinosis. We aim to publicise cystinosis to the medical profession (particularly paediatric consultants) so that those born with cystinosis are identified as soon as possible. Support research into the treatment of cystinosis. Work with cystinosis related charities worldwide to help co-ordinate research support, maintain awareness of new treatments and seek to understand more about metabolic disorders in general.
FOP Friends
FOP Friends is a registered charity in England and Wales dedicated to supporting individuals affected by Fibrodysplasia Ossificans Progressiva (FOP). The organization provides information, advocacy, support services, and funding for research to find a cure for FOP. They engage in public awareness campaigns, host events, and collaborate with medical and research institutions worldwide. Their activities include patient education, clinical trial support, and community building for those living with FOP. The charity also advocates for policy change and medical research to improve the lives of people with FOP. FOP Friends is the UK’s only charity dedicated to supporting families living with Fibrodysplasia Ossificans Progressiva (FOP). It helps families and patients, funds research for treatment and cure, and raises awareness to prevent misdiagnosis. The organization collaborates with medical specialists, other patient organizations, and pharmaceutical companies. It receives no government or NHS funding, relying solely on fundraising and grants. The charity provides trusted information, educational resources, support services, and advocacy activities. It also offers clinical guidelines, support for living with FOP, and emergency procedures. The organization is involved in research, clinical trials, and policy advocacy. It maintains a website with extensive resources, including downloadable leaflets, guides, and contact information for medical professionals. It is registered as a charity in England and Wales (#1147704).
The Myeloma, Lymphoma & Leukaemia Foundation of Barbados
<p>Originally founded in February 2002 as the Myeloma Foundation and Support Group of Barbados, we broadened our scope in May of that year to include Lymphoma and Leukaemia and became known as The Myeloma, Lymphoma and Leukaemia Foundation of Barbados. We are registered as Charity #579. The Foundation finds its genesis in the fact that the experiences and needs of persons afflicted with blood-related cancers are extremely complex and far more unique than those afflicted with more well-known cancers.</p><p>Our mission is to provide comprehensive support to persons suffering from Myeloma, Lymphoma, Leukaemia and other blood-related disorders. We are based in Barbados and therefore cater primarily to Barbadians, although all are welcome.</p><p>The Main Objectives of the Foundation include:</p><ul><li><strong>Support:</strong> To provide a support network for sufferers of blood-related cancers and their families.</li><li><strong>Lobbying:</strong> To act as an effective lobbying agent on behalf of such persons to influence government policy on matters pertaining to blood-related cancers.</li><li><strong>Education:</strong> To educate the Barbadian public about blood-related cancers.</li></ul>
Colorectal Cancer Alliance
To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventive measures; and inspire efforts to fund critical research.