#StrongerTogether

Who we are

We are a network of patient advocacy groups representing rare and complex epilepsies with the support of umbrella epilepsy advocacy groups. As a collective we can advocate on behalf of all rare epilepsies to garner interest or drive change with researchers or stakeholders.
We want more patient advocacy groups to join us to bring us all together for collective change.

Background:
Disorder specific rare epilepsy advocacy groups are experts on their disorder and can offer great support and connection to their affected families. However, they are too small to drive change or garner the interest of researchers or stakeholders.
Many rare and complex epilepsies are refractory to medication and associated with many co-morbidities. Although there are differing aetiologies and day to day needs there is a common set of unmet needs. Together we are one bigger, louder voice to affect change.

Find a disease specific rare epilepsy patient group in the table below:

Arthur’s Quest is a patient advocacy group dedicated to improving the lives of children and families affected by SLC6A1.Our focus is to raise awareness and fundraising to advance scientific research that will ultimately result in a cure. We will continue to work closely with slc6a1connect on this mission.Arthur’s Quest is a UK registered charity (Reg No. 1185380).
 
 

List of rare epilepsies represented: SCLC6a1

Website:https://arthursquest.org/
Facebook: https://www.facebook.com/answersforarthur.slc6a1
Instagram: 
Twitter: 
YouTube :
The BDFA supports families affected by Batten Disease, a rare and terminal neurodegenerative condition, which affects around 250 children and young people in the UK. We also offer informed guidance to professionals as well as actively raise awareness and support research.
 
 

List of rare epilepsies represented: Batten Disease

Website: http://www.bdfa-uk.org.uk
Email : admin@bdfa-uk.org.uk
Facebook: https://www.facebook.com/bdfauk
Instagram: bdfabattendisease
Twitter: @BattenDiseaseuk
Behçet’s disease/syndrome is a rare, complex, debilitating, lifelong condition with no known cause, which can affect any organ in the body and is only treatable to a degree. Neuro-Behcet’s, affecting about 20% of patients with Behcet’s, can cause many symptoms including seizure.
Behçet’s UK strives to secure the best care for all those affected by Behçet’s, including those yet to be diagnosed and assist their carers, parents, and relatives. Similarly, they promote research into the cause, effects, treatment and management of Behçet’s.
 
 

List of rare epilepsies represented: Seizure of various types

Website: https://behcetsuk.org
Email : info@behcetsuk.org
Facebook: https://www.facebook.com/BehcetsUK
Instagram: behcetsuk
Twitter:  @BehcetsUK
CASK-related disorders encompass two ultra-rare neurological diseases caused by a mutation in the CASK gene. CASK Research Foundation raises awareness and funds vital research to improve the lives of people with CASK-related disorders. Our vision is a world where ‘CASK’ is better understood, there are drugs available to target the mechanisms of the disease, provide relief, allow greater cognitive development and, ultimately, cure the disease.
 
 

List of rare epilepsies represented: Infantile Spasms, Epileptic spasms

Website:https://caskresearch.org
Email : info@caskresearch.orghello@glut1deficiency.org.uk
Facebook: Caskresearch
Instagram: Caskresearch
YouTube : Caskresearchfoundation5819
CDKL5 UK is a charity supporting families living with CDKL5. Providing patient advocacy through the research, medical and pharmaceutical communities.
 
 

List of rare epilepsies represented: CDKL5 deficiency disorder, infantile spasms and Lennox-Gastaut Syndrome.

Website: http://curecdkl5.org.uk
Email : info@curecdkl5.org.uk
Facebook: https://www.facebook.com/CDKL5UK/
Instagram: @CDKL5UK
Twitter:  @CDKL5UK
YouTube : CDKL5 UK
Coalition to Cure CHD2 is a 100% volunteer-run organization fuelled by our desire to help our children & others with CHD2-related disorders. Our Mission is to improve the lives of those affected by CHD2-related disorders by funding research necessary for uncovering a cure. Individuals with CHD2-related neurodevelopmental disorders most commonly suffer from (1) refractory epilepsy and (2) developmental delays. CHD2 is a gene located on chromosome 15 that provides instructions for making a protein called chromodomain-DNA-helicase-binding protein 2. This protein regulates gene activity and may play an important role in the brain, although its exact function is not well understood.
 
 

List of rare epilepsies represented: Epilepsies caused by a pathological variant in the gene encoding CHD2.

Website: https://www.curechd2.org
Email : info@curechd2.org
Facebook: https://www.facebook.com/curechd2.org
Instagram: cureCHD2
Twitter: @cureCHD2
YouTube : lauren8433
CRELD1 Warriors provides support for families caring for a child with CRELD1, raises awareness of CRELD1 and supports medical research.
 
 

List of rare epilepsies represented: CRELD1

Website: http://www.creld1.com
Email : adamclatworthy@gmail.com
Facebook: Creld1 Warriors Parents and Loved ones
CureGRIN is a parent run foundation looking for treatments and cures for GRI disorders. GRI Disorders are rare single-gene disorders related to the GRIA, GRIK, GRID and GRIN genes. Epilepsy is a common feature in GRI patients. Other common manifestations are development delay / intellectual disabilities, muscular hypotonia, movement disorders, feeding difficulties, and behaviour problems.
 
 

List of rare epilepsies represented: GRIN1, GRIN2A, GRIN2B, GRIN2C, and GRIN2D genes

Website: http://www.curegrin.org
Providing support, education and research for families affected by Dravet Syndrome, a life-timing epilepsy.
 
 
 

List of rare epilepsies represented: Dravet Syndrome

Website: http://www.dravet.org.uk
Email : info@dravet.org.uk
Facebook: dravetsyndromeuk
Instagram: @dravetsyndromeuk
Twitter: @dravetuk
YouTube : @dravetsyndromeuk
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List of rare epilepsies represented: DHDDS

Website: 
Email : 
Facebook: 
Instagram: 
Twitter: 
YouTube : 
Glut1 Deficiency UK is a non-profit family led charity dedicated to improving the lives of those in the Glut1 Deficiency community through its mission of: Increasing awareness of Glut1 Deficiency Improved education of families and health professional in relation to Glut1 Deficiency Advocacy for families and patients impacted by Glut1 Deficiency Support and funding for Glut1 Deficiency research
 
 
 

List of rare epilepsies represented: Glut1 Deficiency Syndrome

Website: http://www.glut1deficiency.org.uk
Email : hello@glut1deficiency.org.uk
Facebook: Glut1DeficiencyUK
Instagram: Glut1DeficiencyUK
Twitter:  @Glut1UK

YouTube : Glut1DeficiencyUK

 
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.Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families.
 
 
 

List of rare epilepsies represented : Rett Syndrome

Website: http://www.rettuk.org

Promoting research, education and continuous support to end undiagnosed and misdiagnosed Ring20 epilepsy. Our mission is to provide support for individuals, families and healthcare professionals who are affected by, or who come into contact with Ring Chromosome 20 Syndrome or r(20) – a rare epilepsy syndrome.

List of rare epilepsies represented: Ring Chromosome 20 Syndrome

Website: https://ring20researchsupport.co.uk/
Email : ring20@ring20researchsupport.co.uk
Facebook: https://www.facebook.com/Ring20ResearchandSupportUK
Instagram: ring20epilepsy
Twitter: @Ring20UK
 

For patients and families diagnosed with NARS1 disease.

List of rare epilepsies represented: NARS1

Website: https://www.therorybellefoundation.org/
Email: Rachel Heilmann
Twitter: 
YouTube:
SCN8A UK & Ireland is a charity dedicated to improving the lives of children and adults with SCN8A. Supporting families and research for SCN8A disorders.
 

List of rare epilepsies represented: SCN8A

Website: http://www.scn8a.co.uk
Email : Scn8a.ukie@gmail.com
Facebook: SCN8A UK & Ireland
Instagram: scn8a_uk
Sturge Weber UK inspires to promote research and share knowledge to empower individuals diagnosed with Sturge Weber Syndrome and their families and carers. Giving strength to create a supportive, inclusive and caring community whilst raising both public and professional awareness.
List of rare epilepsies represented: Sturge Weber
Syngap1 UK helps unite those families whom have a diagnosis of Syngap1. We also aim to raise the awareness and profile of Syngap1 amongst both the community and professionals. We raise funds for treatment and research, and through hosting annual conferences we bring together families, professionals and researchers.
 
 

List of rare epilepsies represented: All epilepsies are on account of having a rare genetic disorder

Website:http://www.syngapuk.org
Email : syngap1uk@gmail.com
Facebook: Syngap1 United Kingdom Families
The Schinzel-Giedion Syndrome Foundation is a registered UK charity (Registered Charity Number 1186327) established in 2019 by an international group of parents of children with Schinzel-Giedion Syndrome (SGS). Our foundation has been created to represent children with SGS and their families living all around the world. Our mission is to provide support to families caring for a child with Schinzel-Giedion Syndrome, to raise awareness of SGS and to facilitate and support medical research that will help us find better treatments to improve the quality and length of life of children living with SGS. Our vision is for a future when all children with Schinzel-Giedion Syndrome will receive a rapid genetic diagnosis and have access to effective medical and genetic therapies to ensure they live longer, healthier and happier lives.
 
 

List of rare epilepsies represented: Rare epilepsy caused by SETBP1 gene gain of function variants (causing Schinzel-Giedion Syndrome)

Website:https://sgsfoundation.org/
Email : contact@sgsfoundation.org
Facebook: https://www.facebook.com/SchinzelGiedionSyndromeFoundation
Instagram: schinzel_giedion_syndrome
Twitter:  @foundation_sgs
Our mission to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders including Timothy Syndrome and LongQT8. These disorders have a broad spectrum of cardiac and neurodevelopmental clinical features. There are currently no treatment options. We raise awareness, promote relevant research, connect families and individuals with experts and researchers, provide CACNA1C conferences, information and education. We have a strong global support group offering emotional and practical support, helping to reduce feelings of isolation. We are driving research and clinical development through our worldwide CACNA1C Community registry and Scientific Advisory Board
 
 

List of rare epilepsies represented: Spectrum of epilepsies

Website: http://www.timothysyndrome.org
Email : sophie@timothysyndrome.org
Facebook: https://www.facebook.com/timothysyndromealliance
Instagram: timothysyndromealliance
Twitter:  @tsa_charity
The Tuberous Sclerosis Association (TSA) is the only UK charity focused on improving the lives of people affected by rare genetic disorder Tuberous Sclerosis Complex (TSC). We provide help for today and hope for tomorrow by: • Providing direction or a listening ear through our support and information services for the TSC community • Organising events and opportunities allowing the TSC community to come together and feel less alone • Funding research into the causes, diagnosis, management and treatment of TSC • Campaigning to ensure that the TSC community has consistent and meaningful access to social support and healthcare provision
 
 

List of rare epilepsies represented: TSC-related epilepsy

Website: https://tuberous-sclerosis.org/
Email : admin@tuberous-sclerosis.org
Facebook: https://www.facebook.com/thetsauk
Twitter:  @UKTSA
 
The UK infantile spasms trust provides support to families affected by the rare epilepsy syndrome infantile spasms and works with the medical professions to raise awareness.
 
 

List of rare epilepsies represented: Infantile spasms

Website: https://ukinfantilespasmstrust.org/
Email : ukinfantilespasmstrust@gmail.com
Facebook: https://www.facebook.com/UKInfantileSpasmsTrust
Instagram: ukinfantilespasmstrust
Twitter: @UK_IS_T

Find an umbrella association in the table below:

Epilepsy Action is a national member-led epilepsy charity, providing information for the 600,000 people with epilepsy in the UK and anyone with an interest in the condition
 
 

List of rare epilepsies represented: ALL

Website: http://www.epilepsy.org.uk
Email : epilepsy@epilepsy.org.uk
Facebook: https://www.facebook.com/epilepsyaction/
Instagram: epilepsyaction
Twitter:  @epilepsyaction
Epilepsy Scotland works with people affected by epilepsy to ensure that their voice is heard. We campaign for improved healthcare, better information provision, and an end to stigma. We provide services, information, and support via our freephone Helpline, Youth Groups, Wellbeing service, and Welfare Rights Service to help the 58,000 people living with epilepsy in Scotland.
 
 

List of rare epilepsies represented: None

Website: https://www.epilepsyscotland.org.uk/
Email : contact@epilepsyscotland.org.uk
Facebook: https://www.facebook.com/epilepsyscotland
Instagram: epilepsyscotland
Twitter:  @epilepsy_scot
Transforming lives through advocacy, research and care.
 
 
HOPE for Paediatric Epilepsy: London provide support, respite, advice, and recreational opportunities for families with children impacted by a diagnosis of paediatric epilepsy. We host free monthly support/activity sessions in North London. HOPE also organises group family days out as a short form of respite. We also have an advice line that families can contact, a team of parent support advisors and have medically trained specialists volunteering with us too. HOPE also donate anti-suffocation pillows to children and teenagers who have nocturnal convulsive seizures.
 
 

List of rare epilepsies represented: ALL.

Website: https://www.hopeforepilepsylondon.org.uk/
Email : info@hopeforepilepsylondon.org.uk
Facebook:@HopePaediatricEpilepsyLondon
Matthew’s Friends are a UK registered charity since 2004, specialising in medical Ketogenic Therapies. The charity supports patients, families and health professionals by providing information, training, research and grants to develop Ketogenic services and support systems for drug-resistant (refractory) epilepsy. Matthew’s Friends are supported by key medical experts in this field, to ensure the safety and efficacy of their information. Contact the charity to find out how medically-managed Ketogenic Therapies can benefit infants, children and adults with epilepsy and what is entailed.
 
 

List of rare epilepsies represented: ALL

Website: https://www.matthewsfriends.org/
Email : enq@matthewsfriends.org
Facebook: https://www.facebook.com/matthewsfriends
Instagram: matthewsfriendsketogenic
Twitter:  @matthewsfriends
Medcan Family Foundation is a patient led organisation, set up and run by those with direct, personal experience of devastating neurological conditions. As such, the needs of patients are our priority. We support and empower families facing untreatable conditions in their fight to access ground-breaking treatments.
 
 
 

List of rare epilepsies represented: Infantile spasms, Dravet, LGS, SCN8A, PCDH19, TSC among many others

Website: http://www.medcanfoundation.co.uk
Facebook: https://www.facebook.com/medcanfoundation
Instagram: @medcanfamily
Twitter:  @medcanfamily

LinkedIn : @medcanfoundation

The Lily Foundation is the UK’s leading mitochondrial disease charity, and the largest charitable funder of mitochondrial research in Europe. Their mission is to improve the lives of people affected by mitochondrial diseases, working towards a future where mitochondrial diseases can be effectively treated or cured. They provide support to patients and families, while educating and raising public awareness about mitochondrial diseases.
 
 

List of rare epilepsies represented: Childhood onset epilepsies (as seen in Alpers-Huttenlocher syrdrome, Pearson syndrome, pyruvate dehydrogenase complex deficiencies and Leigh syndrome, etc). MELAS, MERFF or POLG-related disorders can present with focal and generalised seizures.

Website : https://www.thelilyfoundation.org.uk/
 
Unique provides support, information and networking to all those affected by rare chromosome and gene disorders. Our membership currently stands at over 27,000 members from all over the world.
 
 
 

List of rare epilepsies represented: All

Website: http://www.rarechromo.org/
Email : info@rarechromo.org
Facebook:https://www.facebook.com/Uniquerarechromosomedisordersupportgroup
Instagram: unique_charity
Twitter:  @Unique_charity
Children and young people with epilepsy have a right to be heard. We stand with them. Childhood epilepsy is frightening, isolating and often a misunderstood condition.   We work with children and young people with epilepsy, to ensure their voices are heard and their rights protected. We campaign for children’s rights. We deliver health services and research that improve diagnosis and treatments. We support children and young people throughout school, college, and university. We provide information, friendly advice, and practical help for living everyday life.
 
 

List of rare epilepsies represented: ALL

Website: https://www.youngepilepsy.org.uk/

Email : rpardington@youngepilepsy.org.uk

Facebook: https://www.facebook.com/YoungEpilepsy
Instagram: youngepilepsy
Twitter:  @YoungEpilepsy

Other epilepsy associations we work with:

Epilepsy sparks: bridging the information gap between patients, neurologists, and scientists and making learning about epilepsy cool.
 
 
 

List of rare epilepsies represented: ALL

Website: http://www.epilepsysparks.com
Email : torie@epilepsysparks.com
Facebook: www.facebook.com/epilepsysparks
Instagram: epilepsysparks
Twitter: @EpilepsySparks
YouTube : https://www.youtube.com/@TorieRobinson