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
Debbie Fund
The Debbie Phillips Cervical Cancer Research Fund (Debbie Fund) is a fund within University College London Hospitals Charity. It funds a dedicated cervical cancer research programme at the UCL Cancer Institute and supports awareness and fundraising efforts. A fund within University College London Hospitals Charity dedicated to cervical cancer research. The Debbie Fund operates as part of UCLH Charity and is associated with cervical cancer research funding and advocacy efforts. The Debbie Fund is owned and operated by Debbie Fund and is connected to privacy and consent terms on the site. The Debbie Fund is dedicated to funding research into cervical cancer, aiming to develop new treatments and find a cure. It was established in memory of Debbie Phillips, who died of cervical cancer. The fund supports research at University College London (UCL) and collaborates with other universities. The organization has raised over £1 million through events like marathons, balls, and community activities. It focuses on cervical cancer, with research on genomics, antibody development, and clinical trials. The fund also engages in public awareness, advocacy, and fundraising campaigns. It is part of University College London Hospitals Charity, with registered charity number 1165398.
Dravet Foundation
We are committed to carrying out our activity in a TRANSPARENT manner, promoting HONESTY and INTEGRITY in all our actions. We look to the future through INNOVATION, through the development of new avenues of research.
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>
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.
Dancing Eye Syndrome Support Trust
The Dancing Eye Syndrome Support Trust, established in 1997, provides mutual support and encouragement to parents of children diagnosed with Dancing Eye Syndrome (Opsoclonus-Myoclonus Syndrome). It offers a platform for parents to connect, share experiences, and access information through meetings and newsletters. The trust also produces educational resources for families and supports research and awareness efforts related to the condition. It arranges meetings for members, produces informational materials, and provides contact details for neurology specialists for adults with childhood-onset OMS. Providing support and information to families of children with Dancing Eye Syndrome. OMAS or Dancing Eye Syndrome is a rare autoimmune condition affecting young children, characterized by rapid eye movements, jerking movements, and loss of balance. Most children are diagnosed around 18 months, with a prevalence of 1 in 5 million children worldwide. The syndrome is often triggered by a neuroblastoma tumor or viral infection. Symptoms include opsoclonus, myoclonus, ataxia, speech difficulties, sleep problems, behavioral issues, hypotonia, and vomiting. Treatment involves immunotherapy, corticosteroids, IVIg, rituximab, and possibly surgery for tumors. The cause varies by age, with neuroblastoma in young children and idiopathic or viral causes in older children. The organization was established in 1997, providing support, raising awareness, and hosting conferences. Contact: support@dancingeyes.org.uk, Tel: 07746 129950. The trust is involved in fundraising, awareness campaigns, and community support.
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.