This year the Jeans for Genes Grant Programme has provided grants to genetic conditions charities that help support their operations and to provide funding for some amazing projects that really do change lives.
Read about the wonderful charities making a difference, because of your Jeans for Genes fundraising in 2024 :
Down Syndrome Training and Support Services Limited
Down Syndrome Training and Support Services aims to provide education and training to children and young people with Down syndrome, alongside their families and educational staff who work with them. The charity’s membership currently has 420 families who care for a child with Down syndrome and 190 organisational beneficiaries, primarily in health and education settings.
Jeans for Genes has awarded the Down Syndrome Training and Support Services a grant towards their core running costs.
Down Syndrome Cheshire
Down Syndrome Cheshire (DSC) is committed to empowering people with Down syndrome (DS) and their families. Their mission is to unlock potential, enabling people with DS to live happy, fulfilling, and independent lives. Established in 2007 by parents of children with DS, the charity has grown into a trusted organisation supporting over 380 individuals with DS and reaching more than 3,500 people, including families, educators, and healthcare professionals.
A Jeans for Genes grant has been awarded to DSC to expand their family support services to offer essential help for up to 100 families during key life transitions.
Dravet Syndrome UK
Dravet Syndrome UK was founded in 2009 by a small group of parents who came together looking for support, resources and information relating to a rare neurological condition called Dravet Syndrome, which is linked to changes in certain genes, including SC1NA. The charity currently supports 554 people living with Dravet Syndrome – 335 of whom are under the age of 15. Their aim is to support families at every stage of their journey emotionally, practically and financially as well as increasing awareness and funding medical research.
A Jeans for Genes grant will help towards Dravet Syndrome UK creating and launching 15 new local networks across the UK where families can safely gather and socialise.
DS Achieve
DS Achieve is a registered charitable incorporated organisation dedicated to supporting
children and young people with Down Syndrome (DS) to thrive and reach their potential. Founded by parents of children with DS in 2018, their purpose is to provide tailored support for individuals with DS, their families, and professionals working with them. The charity supports and champions children and young people with Down Syndrome by providing advice and support to their parents and carers, ensuring professionals are knowledgeable and skilled and creating a positive, inclusive community.
A Jeans for Genes grant will be supporting DS Achieve to run their Little Achievers programme; a well-established early intervention initiative supporting pre-school children with Down Syndrome.
ED Society
The ED Society is a dedicated UK-based charity supporting individuals and families affected by the rare genetic condition, Ectodermal Dysplasia(ED). Their mission is to raise awareness, offer expert advice, and they serve as the primary point of contact for anyone seeking information about ED – whether individuals, families, or medical professionals. In addition, the charity provides tailored guidance to schools, social services, and other relevant authorities to ensure those affected receive the care, understanding, and support they need. Currently, the ED Society supports around 800 families across the UK and offers email-based guidance to over 150 families internationally.
Jeans for Genes has awarded the ED Society a grant towards their core running costs.
Gene People
Gene People work nationally to support families, children and individuals who are living with the effects of a genetic condition, particularly those that are rare. Getting or suspecting a diagnosis of a genetic condition for a loved one can be confusing, scary, daunting and upsetting. If the condition is rare there may be limited options for treatment, and sources of support can be few and far between. It can be isolating and lonely as well as life changing. Gene People’s vision is a world where anyone affected by a genetic condition can receive the information and support they need.
Jeans for Genes has awarded the Gene People a grant towards their core running costs.
Haemophilia Scotland
Haemophilia Scotland is a membership organisation dedicated to improving the life experiences of people in Scotland who are living with a bleeding disorder. Haemophilia is perhaps the best-known bleeding disorder, whilst Von Willebrand Disorder is less well-known but more prevalent, affecting 1 in every 100 people. The charity provides vital services including information, advocacy, events and support to their 425 members. Their services combine a detailed knowledge of different conditions and their specific treatments, with the personal experience of living with bleeding disorders.
Jeans for Genes has awarded the Haemophilia Scotland a grant towards their core running costs.
HDANI
Huntington’s Disease Association Northern Ireland (HDANI) is the only charity in Northern Ireland dedicated to supporting individuals and families affected by Huntington’s Disease (HD). HD is a progressive genetic neurological condition that impacts movement, cognition, and mental health.
HDANI provides essential services, including family support, youth support, counselling and therapies, social and educational support, training and awareness and information and advocacy.
Jeans for Genes has awarded HDANI a grant towards their core running costs.
Immunodeficiency UK
Immunodeficiency UK provides support, advice, and guidance on the diagnosis, management, and treatment of primary immunodeficiencies (PIDs)* caused by genetic factors. The charity is dedicated to improving the health and well-being of individuals affected by PID through advocacy for better care and treatment. It also works to raise awareness and understanding of PID among both the public and medical professionals. In addition, Immunodeficiency UK encourages and supports research into the causes, treatments, prevention, and potential cures for PID – and is committed to sharing the findings of this research for the benefit of all.
Jeans for Genes has awarded Immunodeficiency UK a grant towards their core running costs.
Metabolic Support UK
Metabolic Support UK (MSUK) is the leading charity supporting the UK’s Inherited Metabolic Disorders (IMD) community. Representing over 40,000 individuals affected by more than 1,500 rare and complex conditions, they are the only national organisation dedicated to supporting every person with an IMD — and the families who care for them. These conditions are caused by enzyme or hormone deficiencies that disrupt essential metabolic pathways. For many, diagnosis is life-changing, and living with an IMD can bring daily challenges. MSUK provides trusted support, personalised advocacy, and a strong, united voice to ensure no one faces an IMD alone. As NHS pressure grows and rare disease awareness remains low, the charity’s role becomes more critical than ever.
Jeans for Genes has awarded Metabolic Support UK a grant towards their core running costs.
Nystagmus Network
The Nystagmus Network is a dedicated charitable organisation which serves as a vital lifeline for individuals and families living with nystagmus, a complex and lifelong vision impairment. The charity’s vision is a world which welcomes people living with nystagmus, affords them comprehensive support and the opportunity to reach their full potential. Their mission is to champion the cause of the community they support, to raise awareness of nystagmus, its impact and the interventions needed. Nystagmus Network seeks to change attitudes, break down barriers, build relationships and drive research.
Jeans for Genes has awarded Nystagmus Network a grant to create and distribute a parent-friendly accessible resource to inform and support families through diagnosis.
PTEN UKI
PTEN UKI’S purpose is to improve the lives of patients, parents and carers of all ages, in the United Kingdom and Ireland, who are affected by PTEN genetic alterations, PTEN Hamartoma Tumour Syndrome (PHTS), Cowden Syndrome (CS), or Bannayan-Riley-Ruvalcaba Syndrome (BRRS). This is done through better patient support, increased awareness, more accurate and accessible information, earlier diagnosis and intervention, greater research into treatment and prevention, and improved coordination of care. PTEN UKI supports the PTEN community, their families and caregivers by providing them with a platform to come together (either face-to-face or online) to share their experiences of living with this rare disease.
Jeans for Genes has awarded PTEN UKI a grant towards their core running costs.
Rareminds
Rareminds is the first specialist, non-profit, rare disease counselling and psychotherapy service in the UK. The organisation was established as a CIC in February 2021 and converted to a CIO in October 2023.The charity provide access to affordable, specialist, psychotherapy, counselling and wellbeing support to everyone impacted by a rare disease. Their aim is to become a centralised hub of expertise for rare disease mental health to inform policy and practice and promote standards of excellence.
Jeans for Genes has awarded Rareminds a grant towards their core running costs.
Stargardts Connected
Stargardt’s Connected is a patient-led charity supporting individuals and families with Stargardt’s Disease – an inherited progressive retinal condition causing central vision loss. There is no current treatment or cure for the disease. It is caused by ABCA4 gene mutation. It is a recessive condition, and parents will be carriers of the ABCA4 gene with their children having a 1 in 4 chance of inheriting Stargardt’s Disease. The charity provides tailored information, practical and emotional support and events for those
affected by Stargardt’s Disease. They also fund vital research into Stargardt’s Disease and are often the first port of call for those who are newly diagnosed. Stargardt’s Connected plays a pivotal part in helping to reduce isolation and provide the much-needed reassurance and emotional support during this anxious time.
Jeans for Genes has awarded Stargardt’s Connected a grant towards their core running costs.
The Haemophilia Society
The Haemophilia Society (THS) is the only UK-wide organisation supporting people diagnosed with acquired and genetic bleeding disorders. The charity supports over 5,000 members and their families with free events, publications and advice. It also advocates for the wider UK bleeding disorders community of 40,000, promoting safe, effective treatment, better diagnosis journeys and awareness through campaigns, parliamentary lobbying and collaborations with other organisations.
Jeans for Genes has awarded the Haemophilia Society with a grant to support its Sports Day, a nationwide event to highlight the importance of exercise.
The Leanne Fund
The Leanne Fund provides vital support to children and young people who face the daily challenges of living with Cystic Fibrosis. The organisation currently supports 450 individuals affected by the condition and their families across 12 of the 14 NHS regions of Scotland, with 280 of these aged 18 or below. Their wide range of services offers individuals and families the means to improve their overall wellbeing without financial pressure.
Jeans for Genes has awarded The Leanne Fund a grant towards their core running costs.
The Smith-Magenis Syndrome Foundation UK
The SMS Foundation UK is the only UK charity dedicated to supporting individuals andfamilies living with by Smith-Magenis Syndrome (SMS), a rare genetic disorder caused by adeletion or mutation on chromosome 17p11.2. SMS leads to severe developmental delays, intellectual disabilities, behavioural challenges, sleep disturbances, and serious health
complications. While an estimated minimum of 4,500 people in the UK have SMS, only 530 cases are formally diagnosed, leaving many families without specialist support.
Jeans for Genes has awarded SMS Foundation with a grant to support three training and support projects which play a central role in the organisation’s work.
Unique
Unique offers accurate and accessible medical information for those who are navigating the world of rare chromosome and gene disorders. Unique is an open, supportive community for people who are looking to learn, share lived experiences and connect with others. The organisation produces information guides, has a telephone and email helpline, a family matching service, comprehensive signposting and family fun days to support and enable UK members to establish informal support networks.
Jeans for Genes has awarded Unique with a grant towards their family conference in Birmingham for Spring 2026.