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
Myhre Syndrome Foundation
The Myhre Syndrome Foundation is a nonprofit organization dedicated to supporting individuals with Myhre syndrome, advancing research, and providing resources and community support. They organize conferences, webinars, and provide educational materials to improve understanding and management of the condition. The foundation also collaborates with clinicians, researchers, and advocacy groups to promote awareness and develop targeted therapies. Their activities include patient and family support, medical guidance, research funding, and community engagement.
Digestive Cancers Europe
Digestive Cancers Europe is a patient advocacy organization dedicated to improving the lives of individuals affected by digestive cancers through advocacy, education, research, and support initiatives. They work to raise awareness, influence policy, and provide resources and support to patients and caregivers across Europe. The organization collaborates with healthcare professionals, researchers, and policymakers to advance understanding and treatment of digestive cancers, including colorectal, gastric, liver, pancreatic, and other rare cancers. They also focus on promoting early detection, personalized medicine, and access to innovative therapies. Their activities include publishing educational materials, organizing awareness campaigns, supporting research projects, and engaging in policy advocacy to improve patient outcomes and healthcare systems.
Melanoma Focus
Melanoma Focus is an expert organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They aim to stop melanoma and the suffering it causes through education, research, and advocacy. They offer specialist resources on melanoma stages and treatment, a confidential helpline staffed by expert skin cancer nurses, and organize multidisciplinary meetings and conferences for both patients and professionals. The charity also engages in fundraising activities and promotes sun safety awareness. Melanoma Focus is a patient advocacy organization dedicated to providing information, guidance, and support for patients, carers, and healthcare professionals affected by melanoma. They offer educational resources, support services, and promote melanoma research and awareness. The organization maintains a helpline, trial finder, and produces patient guides, guidelines, and educational videos. They are involved in melanoma staging, treatment, and clinical trials, and support the LGBTIQ+ community. Their activities include advocacy, education, research collaboration, and patient support programs. They also engage in policy and regulatory discussions and have a regional melanoma database project. The organization is committed to inclusivity and provides resources for rare melanoma types and bereavement support.
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.
The FACS Syndrome Association
Welcome to our website. FACSA is a support group for families and children who have been affected by AEDs during pregnancy and have a diagnosis of FACS Syndrome (FVS)
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.