There are a range of support groups offering specialised support for people with genetic conditions and their families. We have included some of these below. If you’ve got a suggestion to add to this page, please get in touch with us.
Rare Disease
Unique
Unique's 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.
Unique
Genetic Alliance UK
Genetic Alliance UK work on a variety of issues that families and individuals with genetic conditions face. They aim to provide information, support families and influence the services needed by these patients. They also work to add patient voice into debates that matter to our community. Their work falls into different categories: reproductive techniques, diagnosis, medical research, healthcare and delivery, access to treatments and living and education.
Genetic Alliance UK
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. 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.
Rare Disease UK
SWAN UK
SWAN UK is the only dedicated support network in the UK for families affected by a syndrome without a name – a genetic condition so rare it often remains undiagnosed. The aim of SWAN UK is that every family gets the support that they need, regardless of whether or not they have a diagnosis. SWAN UK is a community run by Genetic Alliance UK, the national charity of over 200 patient organisations, supporting all those affected by genetic conditions.
SWAN UK
Beacon
Beacon is a UK-based charity that is building a united rare disease community with patient groups at its heart. They envision a world in which no one faces their rare journey alone. Their charity upskills rare disease patient groups through trainings, guided programmes, community projects and research initiatives. They help these groups maximise their impact and deliver change for the world’s often neglected rare disease patients.
Beacon
Medics for Rare Disease
Medics for Rare Disease work to shape a medical profession that can provide people living with rare conditions a timely diagnoses and excellent care. Medics for Rare Disease provides education about the relevance of rare disease to everyday clinical medicine and equips doctors to manage their patients effectively. Their ultimate aim is to speed up the journey to diagnosis and improve the patient experience.
Medics for Rare Disease
Breaking Down Barriers
Breaking Down Barriers is a network of over 60 organisations working together to improve the lives of families from diverse and marginalised communities who are affected by genetic conditions so they have equal access to health services. The Breaking Down Barriers network of organisations, working at a grassroots level, is sharing good practice and exploring new ideas to help educate, empower, and provide an evidence base to promote equity of access to mainstream health services.
Breaking Down BarriersCancer
Macmillan Cancer Support
Macmillan Cancer Support provides specialist health care, information and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care. Macmillan Cancer Support's goal is to reach and improve the lives of everyone affected by cancer in the UK.
Macmillan Cancer Support
Cancer Research UK
Cancer Research UK fund scientists, doctors and nurses to help beat cancer sooner. They 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.
Cancer Research UK
Lynch Syndrome UK
Lynch Syndrome UK was founded in early 2014 by a group of people that met on a social media support group originally set up by the late Janet Norridge. Being frustrated by the lack of information and stories of erratic screening regimes throughout the UK, they came together to change things for people with Lynch syndrome and their families for the better.
Lynch Syndrome UK
The Eve Appeal
There are five gynae cancers, which are womb, ovarian, cervical, vulval and vaginal cancer. The Eve Appeal's aim is to prevent gynae cancers from developing in the first place, but if they do develop, they want to make sure they’re detected early so more people survive their diagnosis.
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Breast Cancer Now
Breast Cancer Now is here to change the lives of people affected by breast cancer by combining the power of research and support. Their world-class researchers are working in labs across the UK and Ireland to create a world where the words "breast cancer" aren't met with fear. And because over 600,000 people are living with or beyond the disease, they're here with support for today, too.
Breast Cancer Now
CoppaFeel!
CoppaFeel We want to ensure all breast cancers in young people are diagnosed early and accurately. They speak to young people about why chest checking is important. From festivals to university campuses. From TikTok to shower cubicles. CoppaFeel are there to raise awareness of breast cancer.
CoppaFeel!
Prostate Cancer UK
Prostate Cancer UK are striving for a world where no man dies from prostate cancer.
1 in 8 men will get prostate cancer. They work to give every man the power to navigate it. Whether that’s helping you to understand your risk, make the right choice about treatment or get the expertise you need to feel informed and in control.
Other conditions
British Heart Foundation
The British Heart Foundation is a cardiovascular research charity in the United Kingdom. It funds medical research related to heart and circulatory diseases and their risk factors, and runs influencing work aimed at shaping public policy and raising awareness.
British Heart Foundation
Antenatal Results and Choices
ARC is the only national charity helping parents and healthcare professionals through antenatal screening and its consequences. They offer impartial information and support to expectant parents facing decisions about antenatal tests and results. They do this throughout their journey – before, during and after tests, receiving unexpected or difficult news from tests and making decisions about what to do.
Antenatal Results and Choices