Find Your Patient Support Community

Aplastic Anemia & Myelodysplasia Association of Canada

AAMAC funds research into bone marrow failure diseases such as aplastic anemia, PNH and MDS. The organization provides peer-to-peer support via telephone and email, educational materials, quarterly newsletters, and local support group meetings in various cities including Ottawa, London, Hamilton, Edmonton, Quebec, and Toronto. They also offer resources such as presentations, newsletters, articles, and emergency room cards. The organization is involved in clinical trials, with current trials conducted at Juravinski Cancer Centre, Princess Margaret Hospital, and Odette Cancer Centre. They engage in advocacy activities, provide patient education, and maintain a website with extensive resources.

Pancreatic Cancer Action

What we do: Early diagnosis Subscribe Taking Action in Scotland The team at Pancreatic Cancer Action Current vacancies Contact Us Support from Trusts and Foundations Financial information Your privacy About Pancreatic Cancer Action We are the only UK charity that specifically focuses on improving pancreatic cancer survival rates through early diagnosis in everything we do. We raise awareness of the symptoms and risk factors of pancreatic cancer across the year. Join us by raising awareness of pancreatic cancer and by sharing your story! Founded by a pancreatic cancer survivor, Ali Stunt, who proves that survival is possible, Pancreatic Cancer Action’s vision is a day when everyone is diagnosed early and survives pancreatic cancer. Quite simply, we know that pancreatic cancer can be detected early, and as long as we are here and continue to be supported, we will do all we can do to make sure this happens more and more.

World Pancreatic Cancer Coalition

Rett UK

Rett UK is the only UK charity that provides professional support to people living with Rett syndrome across the UK. Rett UK was founded in 1985 round a kitchen table by Yvonne Milne MBE. Since then we have grown to be the leading provider of information to not only families but also medical professionals new to the world of Rett syndrome.

Muscle Help Foundation

The Muscle Help Foundation (MHF) is a registered charity dedicated to transforming the lives of children and young adults living with Muscular Dystrophy through the delivery of Muscle Dreams — unique, life-changing experiences that foster hope, joy, and community. Established to support individuals affected by muscular dystrophy, MHF organizes and funds a variety of programs including Muscle Dreams, community outreach, and support services. The organization collaborates with healthcare providers, research institutions, and corporate partners to advance research, advocacy, and patient support. MHF's mission is to deliver 657 Muscle Dreams across the UK, each representing a life-changing experience for every muscle in the human body, empowering beneficiaries and their families. The foundation actively engages in advocacy campaigns, educational initiatives, and partnerships to raise awareness and improve quality of life for those with muscular dystrophy. With a dedicated team of staff, volunteers, and trustees, MHF strives to be a leader in the muscular dystrophy community, fostering hope, resilience, and inclusion.

Fragile Society

The Fragile X Society was formed in 1990 by families whose children had just been diagnosed with Fragile X Syndrome. At that time there were no facilities to support and inform families about any aspect of Fragile X. The charity has since grown to consist of a team of dedicated employees and volunteers, supporting thousands of individuals and families.