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Max Appeal

Resource Library page for Max Appeal. Provides access to all of Max Appeal's literature, professional papers, and useful web pages and links around the world. Encourages participation in or understanding current research into 22q; directs visitors to Library, Research, and Useful Links sections to learn about 22q and related resources.

Pembe Hanım

LL HakkımızdaKanser Toplumsal Bir SorundurPembe Hanım Kanserli hasta ve hasta yakınları tarafından kurulmuş, ticari amaç gütmeyen tam bağımsız bir sivil toplum kuruluşudur. Bir hasta derneği olan PH sağlık politikalarında hastaların sesini olmakta, kanser politikalarının oluşturulmasına katkıda bulunmaktadır. Bir Ulusal Kanser Enstitüsü kurulmasını hedefleyen, bilgiye erişimi önemseyen PH kanser hasta ve yakınlarına moral destek vermektedir.MisyonKanser hastası ve yakınlarının bilgiye erişimini sağlamak,moral destek vermek, yaşam kalitesini yükseltmek ve kanserin iyileşebilir bir hastalık olduğunu anlatmak.VizyonKanser hasta hakları savunuculuğu yapmak, sağlık politikalarında etkili olmak, kanser hastasını sorunların çözümünde ve sağlık politikalarında çözüm ortağı yapmak

Matthews Friends

We support patients, families and professionals by providing information, training, research and grants to develop Ketogenic services and support systems.

World Pancreatic Cancer Coalition

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.

Champ 1 Foundation

Our mission is to improve the lives of those affected by CHAMP1 through clinical research, effective treatments, public awareness, early detection, family support and patient advocacy.