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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Hope for Hypothalamic Hamartomas
Hope for Hypothalamic Hamartomas is dedicated to supporting research into hypothalamic hamartomas (HH), a rare brain disorder characterized by lesions in the ventral hypothalamic region. The organization funds and awards research grants, facilitates international symposia, and collaborates with leading medical and research institutions worldwide. Their research initiatives include genomic profiling, functional MRI studies, animal model development, and genetic research to better understand HH etiology, diagnosis, and treatment options. They actively support scientific exchange through conferences and publish research articles. The organization also engages in advocacy, provides educational resources, and partners with medical professionals and institutions to advance HH research and treatment.
Schinzel-Giedion Syndrome Foundation
The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world. The Schinzel-Giedion Syndrome Foundation is a UK registered charity established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). It aims to represent children with SGS and their families worldwide. The foundation is involved in research, advocacy, and support activities related to SGS. It collaborates with medical and scientific advisory boards, and maintains a registry and resources for families and professionals. The foundation also engages in public education, policy advocacy, and fundraising efforts. It provides educational materials, supports families, and promotes research into SGS, including genetic, clinical, and therapeutic studies. The foundation's activities include organizing conferences, publishing research, and fostering collaborations among researchers, clinicians, and families.
NCBRS Worldwide Foundation
The NCBRS Worldwide Foundation is a patient advocacy organization dedicated to supporting individuals with Nicolaides-Baraitser Syndrome (NCBRS) and their families. It provides resources, educational materials, and support networks to help families understand and manage the condition. The foundation also promotes research and awareness initiatives to advance understanding of NCBRS. It collaborates with medical professionals, researchers, and other organizations to improve patient care and facilitate research efforts. The foundation's activities include hosting conferences, providing informational resources, supporting patient registries, and engaging in advocacy to influence policy and funding for NCBRS research and support.
Medics4RareDiseases Ltd
Medics4RareDiseases Ltd is a Charitable Incorporated Organisation (CIO) registered in England & Wales. It is a charitable organization focused on raising awareness and supporting rare disease communities. The organization is funded by donations and sponsorship, and it does not provide clinical services or medical referrals. Its activities include advocacy, awareness campaigns, and community engagement in the field of rare diseases.
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.
Skin Cancer Foundation
The Skin Cancer Foundation is dedicated to education, prevention, early detection, and prompt, effective treatment of skin cancer. It is a nonprofit organization that relies on donor funds. The Foundation promotes sun safety and skin cancer awareness through public education campaigns, professional training, and research support. It also provides resources for skin cancer detection and prevention, including educational materials, screening programs, and advocacy for sun protection policies. The Skin Cancer Foundation is a nonprofit organization dedicated to education, prevention, early detection, treatment, and research of skin cancer. It provides resources for patients, medical professionals, and the public, including treatment information, prevention tips, and support services. The Foundation also advocates for policies to reduce skin cancer risk and promotes sun safety awareness. It collaborates with healthcare providers, researchers, and community organizations to advance skin cancer awareness and care.