Support groups
There are a number of support groups for people with cancer or a rare disease and their families.
For rare diseases, these include:
Unique
Our mission is to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder, copy number variant or single gene disorder associated with learning disability/developmental delay and to raise public awareness.
Genetic Alliance
We work on a variety of issues that families and individuals with genetic conditions face. We aim to provide information, support families and influence the services needed by these patients. We also work to add patient voice into debates that matter to our community. Our work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Beacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. We envision a world in which no one faces their rare journey alone. Our charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. We help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.
Rare Disease UK
Rare Disease UK is the national campaign for people with rare diseases and all who support them. Rare Disease UK provides a united voice for the rare disease community by capturing the experiences of patients and families. We work with our supporters to raise the profile of rare diseases across the UK. We seek to bring about lasting change offering better health and quality of life for individuals and families affected by rare diseases. Rare Disease UK is focused on making sure the new UK Rare Diseases Framework is as successful as possible, and to ensure that patients and families living with rare conditions have equitable access to high quality services, treatment and support. Rare Disease UK is a campaign run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions.
SWAN: Syndrome Without A Name
Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Without a diagnosis it can be difficult to access basic information and support. We have information leaflets which are available to download. We offer 24/7 information and support through our online forums for registered members.
Medics4RareDiseases
Medics4RareDiseases or M4RD is a registered charity focused on driving attitude change towards rare diseases amongst medical students and doctors in training. M4RD provides pragmatic and flexible tools and education, to not only raise awareness of rare diseases but to empower medical professionals to recognise and manage these conditions. M4RD aims to reduce the ‘diagnostic odyssey’ to improve patients' experience and wellbeing.
Breaking Down Barriers
Breaking Down Barriers is a network of organisations working together to develop supportive and inclusive services for individuals and families affected by genetic conditions. We support people and organisations to develop their own cultural humility, to become aware of unconscious bias and the impact of stereotypes and instil equity, diversity, and inclusion in everyday working practices. We support the network to develop creative and accessible ways to engage, support and involve people from diverse and marginalised communities and strive for equitable access to support and healthcare services for all.
For cancer, these include:
Macmillan
We are millions of supporters, professionals, volunteers and campaigners. Together we make sure you’re treated like a person – not just a patient – and get the support you need to live life as fully as you can.
Cancer Research UK
Cancer Research UK fund scientists, doctors and nurses to help beat cancer sooner. We also provide cancer information to the public. CRUK want survival in the UK to be among the best in the world. Their efforts are focused on four key areas – working to help prevent cancer, diagnose it earlier, develop new treatments and optimise current treatments by personalising them and making them even more effective.