International LGS Support
LGS is Hard. Finding Support doesn’t need to be!
The LGS Foundation understands the importance of connecting with your community and the impact that can have on your journey with LGS. We strive to provide families with useful and relevant information, resources, and support.
With that being said, the following list contains links to third-party websites. Therefore, the LGS Foundation is not responsible for the content or privacy policies of these external sites. While we try to only list sites here that we feel contain useful information for our families, a listing here should not be construed as an endorsement for any products or services they may provide.
Rare Diseases International – Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases. RDI’s mission is to be a strong common voice on behalf of rare disease patients around the world, to advocate for rare diseases as an international public health priority and to represent its members and enhance their capacities. RDI has more than 100 member organizations from 48 countries, that in turn represent rare disease patient groups in more than 150 countries worldwide.
International Bureau for Epilepsy – As an umbrella organization, IBE Chapters are comprised of national epilepsy associations whose focus is, in the main, on the social aspects of epilepsy and who, in turn, support people with epilepsy, their families, and caregivers.
Recognizing regional diversity, IBE Chapters are grouped within seven regional structures following the WHO regional boundaries: Africa, Eastern Mediterranean, Europe, Latin America, North America, South East Asia, and Western Pacific.
Support Resources by Country
LGS Foundation Canada Support Group – The LGS Foundation moderates several social network groups for those affected by LGS. Get the emotional support you need from others in similar circumstances, and gain practical advice and insights on managing treatments or therapies for LGS. Our network allows families to truly connect, make real friendships, and share daily ups and downs in a judgment-free place.
Fireflies Network, France – Réseau-Lucioles is an association whose objective is to improve support for people with severe mental disabilities.
Federation of Associations of People Disabled by Severe Epilepsy, France – EFAPPE is the national federation of associations for people with severe epilepsy (pharmaco-resistant).
Ghana Rare Disease Org – Rare Disease Ghana Initiative (RDGI) is a registered national Non-Governmental Organization in Ghana made up of a network of professionals, patients, caregivers, and organizations whose aim is to develop, seek wide endorsement, and advocate for the implementation of a plan to support research, education, service development and seek support for individuals and families affected by undiagnosed, genetic and rare diseases in Ghana.
Rare Diseases in India – Indian Organization for Rare Diseases (IORD) is an umbrella organization, representing interests of all rare disease patients, patient support groups, health policy advocates and health care providers extending support or working in the field of any of the undermentioned rare disease groups.
Organization for Rare Diseases India – ORDI’s mission is to be the strong united voice for all rare diseases in India, to reduce inequalities and ensure that people living with rare diseases have access to the same resources as any other population.
Family Association LGS Italia – The LGS Italia Family Association is made up of families whose children suffer from a rare and serious form of drug-resistant epileptic encephalopathy associated with slow cognitive development and personality disorders.
The Jamaican Epilepsy Association – The JEA advocates for the rights of people with epilepsy ensuring that they have access to needed services and works to raise awareness of epilepsy, to reduce the stigma and create a more welcoming and inclusive society.
Association for LGS Patients and Their Families in Japan – We aim to be a bridge between not only patients and their families, but also medical professionals and everyone else involved in LGS/DRE*, and to create a community where we can all learn correctly and have fun together while disseminating and sharing various information.
National Association of Mental and Rare Deficiencies, Portugal – In Portugal, there are around 800,000 people with rare diseases and several hundred undiagnosed patients. Raríssimas’ mission is to provide an innovative response to the needs of people with rare diseases, their families, caregivers and friends, by providing a range of specialized services.
Young Epilepsy United Kingdom – We exist to create a society where children and young people with epilepsy are enabled to thrive and fulfil their potential. A society in which their voices are respected and their ambitions realized. Our purpose is to inform, educate, inspire, and engage the nation, through young people with epilepsy living ambitious and fulfilled lives.
LGS Foundation United Kingdom Support Group – The LGS Foundation moderates several social network groups for those affected by LGS. Get the emotional support you need from others in similar circumstances, and gain practical advice and insights on managing treatments or therapies for LGS. Our network allows families to truly connect, make real friendships, and share daily ups and downs in a judgment-free place.
The UK Infantile Spasms Trust (UKIST) - The UK Infantile Spasms Trust (UKIST) provides a network of support to families with children affected by the rare seizure disorder infantile spasms, also known as West syndrome. The charity offers a lifeline to anxious parents via its online community, and works alongside medical professionals to raise awareness of this little known condition, which can be very difficult to recognise – but potentially very damaging if left untreated.
Updated 08/27/24 (KK)