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
Batten Disease Family Association
The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure. The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Lightning and Love Foundation
To raise awareness, advance scientific research through fundraising and advocacy, and find a cure for diseases caused from mutations in the THAP12 gene ultimately transforming the lives of those affected; and in turn helping change the landscape and providing knowledge and hope for all people living with ultra-rare diseases.
Huntington's Disease Youth Organization
HDYO is the only organization who focus solely on supporting young people impacted by HD around the world. Will you help us? HDYO offers resources, peer support, and connects young people impacted by Huntington's Disease globally. They provide educational materials, support groups, and advocacy initiatives to improve the lives of affected individuals and their families. The organization also engages in research support and collaborates with various partners to enhance awareness and support services.
African Caribbean Leukaemia Trust (ACLT)
The African Caribbean Leukaemia Trust (ACLT) is dedicated to registering stem cell, blood, and organ donors, especially focusing on diversifying donor registers to include more Black heritage donors. They work in partnership with organizations like NHS Blood & Transplant, Anthony Nolan, and DKMS to encourage registration and donation. ACLT does not directly take donations but promotes registration drives, volunteer programs, fundraising, and sponsorship to support their mission of saving lives through donor registration. They also highlight the importance of blood and stem cell donations for patients of all ethnicities, with a particular emphasis on supporting patients of Black heritage who require closely matched donors. The organization is involved in advocacy, awareness campaigns, and community engagement to increase donor diversity and support patients with blood cancers and disorders.
Asociación ALMA
Asociación ALMA is a patient organization formed by patients and family members of patients with leukemia and other blood disorders. It aims to provide emotional and practical support to patients with leukemia and other blood pathologies not supported by other organizations. The organization offers various programs including patient education, emotional containment, legal advice, and emotional support. It seeks to empower patients through educational webinars, patient meetings, and support groups. The organization also advocates for patient rights, collaborates with sponsors and members, and maintains a focus on leukemia and related hematological conditions. It is based in Argentina and operates nationally, with a mission to support and empower blood disorder patients.
Annabelle's Challenge
Annabelle's Challenge is a charity focused on supporting individuals affected by vascular Ehlers-Danlos syndrome (vEDS). The organization provides support programs, awareness campaigns, research funding, and professional guidance. It aims to improve quality of life for patients and families, promote research and medical understanding, and advocate for better healthcare and support services. The charity also hosts conferences, supports patient stories, and collaborates with NHS services and other professional organizations to advance knowledge and care for vEDS. Annabelle's Challenge is a patient advocacy organization dedicated to supporting individuals with vascular Ehlers-Danlos syndrome (vEDS). It provides resources, support groups, educational materials, and advocacy for patients and families affected by vEDS. The organization aims to improve awareness, facilitate research, and enhance patient care through collaboration with healthcare professionals and the community. It offers a helpline, educational resources, emergency preparedness tools, and opportunities for involvement in research and outreach activities. Annabelle's Challenge also promotes self-advocacy, mental health support, and access to medical information to empower patients in managing their condition.