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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.

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We were founded in the 1970s by families of disabled children, who recognised that even if their child’s conditions were different, they shared a common experience – of being a family with a disabled child. They understood how important it is to support each other. A lot has changed since then but some things haven’t changed nearly enough. There is a desperate lack of services and support for the 620,000 parents in the UK who care for a disabled child. As a result, families face a huge range of challenges and many feel isolated and alone. Coping with extra financial costs and practical challenges can put an enormous strain on daily life, with families more likely to face emotional issues, stress and anxiety. We are here for all families with disabled children – supporting families, bringing families together and helping families take action for others. Our vision is that families with disabled children feel valued and are strong, confident and able to make the decisions that are right for them.

World Pancreatic Cancer Coalition

Myotubular Trust

The Myotubular Trust is a UK-based charity dedicated to supporting research, raising awareness, and providing support for individuals affected by myotubular and centronuclear myopathies. It aims to accelerate treatments and improve quality of life through funding research projects, fostering collaborations, and engaging with the community. The organization also offers educational resources, patient registries, and advocacy campaigns to promote understanding and drive progress in the field.

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.

パンキャンジャパン

NPO法人パンキャンジャパンは、すい臓がん（膵臓がん）に関する啓発、研究支援、政策提言、患者支援など多岐にわたる活動を行う日本の非営利団体です。2006年に設立され、膵臓がん撲滅を目指して、患者や家族、医療関係者と連携しながら情報提供や支援を展開しています。研究支援や啓発活動、政策提言を通じて、膵臓がんの早期診断・治療法の普及と患者のQOL向上に努めており、国内外の医療・研究機関とも連携しています。