Helping patients find information when they are discovering their disease
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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
Behçet's UK
Behçet's UK is a patient advocacy organization dedicated to supporting individuals affected by Behçet’s disease. They provide information, support services, and promote research to improve diagnosis and treatment. The organization operates a helpline, offers patient education resources, and runs support groups and events across the UK. They are involved in advocacy activities to raise awareness and influence policy related to Behçet’s disease. The organization maintains a website with comprehensive information and links to social media platforms. They also coordinate with national centers of excellence for specialized care. Behçet's UK is a charity dedicated to supporting individuals affected by Behçet's disease, a rare and complex autoimmune condition. The organization provides patient support, promotes research, and raises awareness about Behçet's disease. It offers various programs including support groups, educational resources, and advocacy activities. Behçet's UK collaborates with medical professionals and research institutions to improve patient care and outcomes. The organization also hosts conferences, surveys, and community events to engage with patients and healthcare providers. It maintains a helpline, social media presence, and partnerships with other health and advocacy groups. The charity is committed to advancing understanding and treatment of Behçet's disease through research and policy influence.
Brainstrust
Brainstrust is a brain tumour charity dedicated to providing support, information, and resources for individuals affected by brain tumours. They offer patient guides, practical help, support videos, and campaigns to raise awareness and improve quality of life for patients and their families. The organization also engages in research, collaborates with healthcare professionals, and advocates for better treatment options. Their services include a 24/7 helpline, educational resources, support groups, and community events. Brainstrust aims to empower patients with knowledge and confidence to navigate their diagnosis and treatment journey, reduce fear and isolation, and promote research and policy change to improve outcomes.
Glaucoma UK
Glaucoma UK is a charity dedicated to providing help and support to everyone living with glaucoma. They offer a helpline, support groups, a buddy scheme, and free resources like eye drop dispensing aids, booklets, and posters. The organization also funds sight-saving research into the detection, management, and treatment of glaucoma, and runs awareness campaigns like Glaucoma Awareness Week. They engage patients through initiatives like the Glaucoma Patient Voice Study to shape future care. Glaucoma UK is the operating name of the International Glaucoma Association. Glaucoma UK is the operating name of the International Glaucoma Association, a charity registered in England & Wales (No 274681) and in Scotland (No SC041550). It is dedicated to supporting people with glaucoma through information, support services, research funding, and advocacy. The organization provides educational resources, support groups, a helpline, and funds research projects. It also offers free resources such as booklets, posters, and dispensing aids to help patients manage their condition. Glaucoma UK actively engages in public awareness campaigns, promotes early diagnosis through routine eye tests, and collaborates with healthcare professionals and research institutions. The organization is committed to improving eye health and preventing sight loss from glaucoma. Glaucoma UK is a membership charity dedicated to ending preventable sight loss caused by glaucoma. They campaign to raise awareness for early detection and treatment, support individuals living with glaucoma by providing access to reliable help and resources, fund high-quality research into glaucoma prevention, diagnosis, treatment, and cure, and advocate for patients in policy, service development, and care delivery. The organization is governed by a Board of Trustees, including glaucoma specialists and individuals with firsthand experience of the condition. They operate a Clinical Advisory Panel of ophthalmology and optometry experts, and support research, patient support services, and public education initiatives. Their values include trust, ambition, determination, compassion, inclusion, integrity, collaboration, and empowerment. They have a registered office in Ashford, Kent, UK, and are registered charities in England & Wales and Scotland.
Osteogenesis Imperfecta Foundation
The mission of the OI Foundation is to improve the quality of life for those living with osteogenesis imperfecta through research, education, awareness and mutual support. The Osteogenesis Imperfecta Foundation, Inc., is a registered 501(c)(3) non-profit organization. Tax ID: 23-7076021. Information on this website may be reproduced provided a full citation of the source is given.
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.
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.