Families Resources

Useful links

Useful links

Seizures and Practical Help

SUDEP Action
SUDEP Action cares for the bereaved and works with families and professionals to make change. Using research and awareness they strive to get the answers that will save lives:
www.sudep.org

Matthew’s Friends
An independent UK charity to support all those involved with the ketogenic diet and other dietary treatments for epilepsy and to help further research and development into the use of Dietary Treatments for Epilepsy:
www.matthewsfriends.org

LivaNova
A global medical technology company with a relentless commitment to improve the lives of patients around the world. Their advanced technologies and breakthrough treatments include work with VNS Therapy. VNS Therapy is a minimally invasive treatment option designed to prevent seizures before they start and stop them if they do - it has been used to date by more than 100,000 patients globally.
www.livanova.com

Support

Dravet Syndrome UK Facebook Forum
A private online social networking forum set up and managed by Dravet Syndrome UK to support UK families affected by Dravet syndrome and other related genetic sodium channel epilepsies. Members need to apply to join and will be verified by a moderator to ensure privacy:
https://www.facebook.com/dravetsyndromeuk

Hope London
London-based epilepsy support group, set up and run by a Dravet Dad, holding monthly activity sessions where children with epilepsy and their siblings can meet each other and have some fun:
www.hopeforepilepsylondon.org.uk

Hope Tameside
Tameside-based epilepsy support group, set up and run by a paediatric epilepsy nurse and parents affected by epilepsy, holding monthly activity sessions where children with epilepsy and their siblings can meet each other and have some fun:
www.hopetameside.org.uk

Sibs
The only UK charity representing the needs of siblings of disabled people:
www.sibs.org.uk

Financial Information

Carer’s Trust
UK based charity with the vision of a world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives. Providing information and advice on all aspects of being a carer:
www.carers.org

Holiday Grants & Insurance

React
Rapid Effective Assistance for Children with Potentially Terminal illness is a dynamic charity working to improve the quality of life for children with life-limiting illnesses living in financially disadvantaged households throughout the UK:
www.reactcharity.org

Genetic Alliance UK
The national charity of over 150 patient organisations supporting all those affected by genetic conditions. Provides an information service, including information on travel insurance:
www.geneticalliance.org.uk

General Grants

Cerebra
A UK charity set up to help improve the lives of children with brain related conditions through research, education and directly supporting the children and their carers:
www.cerebra.org.uk

Roald Dahl’s Marvellous Children’s Charity
A UK based charity, focusing on children with neurological conditions, which gives direct assistance to families with grants to help pay for things like expensive equipment or activities, such as weekends away with other children and families experiencing the same illnesses:
www.roalddahlcharity.org

Family Fund
The UK’s largest provider of grants to low-income families raising disabled and seriously ill children and young people. They can help with essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and much needed family breaks together:
www.familyfund.org.uk

Caudwell Children
Charity providing family support services, equipment, treatment and therapies for disabled children and their families across the UK
www.caudwellchildren.com

Partners

Sparks
Dravet Syndrome UK’s major research partner, Sparks is a children’s charity that raises money to fund pioneering children’s medical research. 1 in 30 children in the UK is born every day with a condition that may affect them for life.
www.sparks.org.uk

Jeans for Genes
A national fundraising event, Jeans for Genes raises awareness and funds for children with genetic disorders by supporting smaller charities across the country with grants. It is estimated that one child in every 25 is affected in this way – that’s a massive 30,000 babies and children who are diagnosed with a genetic disorder every year.
www.jeansforgenesday.org 

General

Young Epilepsy
Young Epilepsy exists to improve the lives of children and young people with epilepsy to enable them to fulfil their potential and ensure they have the best quality of life. They run a school, further education college and produce publications and resources, which families may find useful:
www.youngepilepsy.org.uk

Together for Short Lives
The leading UK charity that speaks for all children with life-threatening and life-limiting conditions and all who love and care for them.They provide information, publications and resources, which families may find useful:
www.togetherforshortlives.org.uk

British Paediatric Neurology Association
The British Paediatric Neurology Association is the professional organisation for doctors who specialise in the care of children with neurological disorders.
www.bpna.org.uk 

Dravet Syndrome Foundation
A US organisation aggressively raising research funds for Dravet syndrome and related epilepsies; as well as increasing awareness of these catastrophic conditions; and providing support to affected individuals and families.
www.dravetfoundation.org

Epilepsy Action
Epilepsy Action is a leading UK epilepsy organisation set up to improve the lives of anyone affected by the condition. It is a member-led association and represents people with epilepsy, their families, carers, friends and professional healthcare workers.
www.epilepsy.org.uk

Scope
Scope is a charitable organisation providing information and support to disabled people and their families and to help make the UK a place where people with disabilities have the same opportunities as everyone else.
www.scope.org.uk

Cerebra
Cerebra is a national charity that helps to improve the lives of children up to sixteen years of age who have brain-related conditions, and their families and carers, through support, education and research.
www.cerebra.org.uk