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Featured Support Groups
Connect with these highly rated patient advocacy groups that are making a difference in their communities
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.
Chromosome 18 Europe
Chromosome 18 Registry and Research Society (Europe) is a charitable organization (Charity Number SC040399) associated with the Chromosome 18 Registry and Research Society. It facilitates a European community for families, friends, and members affected by Chromosome 18-related conditions, coordinating governance through a Management Committee and communicating developments ahead of its Annual General Meeting. The event described on this page is an informal, family-friendly gathering at the Glasgow Science Centre intended to connect attendees, share experiences, and discuss the organisation’s future direction, with feedback invited ahead of the next AGM. The site notes an international component, including a visit by several families from the US Chromosome 18 Registry and Research Society to Scotland.
Albinism Fellowship
Albinism Fellowship is a UK-based charity dedicated to supporting people affected by albinism and their families. Its mission includes raising awareness, providing information, advocating for individuals with albinism, and offering resources and community engagement through events, education, and membership. Core activities evidenced on the site include Understanding Albinism and FAQ for Albinism as educational resources, Other useful organisations as a resource hub, hosting events such as the Albinism Fellowship Conference, providing a contact channel via Get in Touch, and maintaining a presence through Membership, Podcast, Baby Boxes, and social media. The organization operates within the United Kingdom and has registered charity numbers in England & Wales (1196004) and Scotland (SC009443).
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.
The Ehlers Danlos Society
The Ehlers Danlos Society is a global organization dedicated to improving the lives of people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The society provides education, research funding, clinical resources, and advocacy to support patients, families, and healthcare professionals. It aims to increase awareness, promote diagnosis, and advance research to find better treatments and ultimately a cure for EDS and HSD. The society also offers support groups, patient stories, and community engagement initiatives to foster a strong network of individuals affected by these connective tissue disorders. The Ehlers Danlos Society is a patient advocacy organization dedicated to improving the lives of individuals with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). The organization focuses on research, education, support, and advocacy to raise awareness and improve diagnosis and management of these connective tissue disorders. It offers patient support programs, educational resources, and promotes research collaborations. The Society also engages in policy advocacy and provides a platform for patient stories and community engagement. It operates globally, with a focus on patient-centered initiatives, and collaborates with healthcare professionals, researchers, and other organizations to advance understanding and treatment of EDS and HSD.
Pancreas Hope
Mobilise patients, families and friends to collect and share their testimonies, make themselves heard and understood. Inform members of ESPOIR PANCREAS and the general public about advances in treatment Raise public awareness of pancreatic cancer Represent patients on ad hoc committees