Advocacy and Support

Reaching out to an advocacy or support group can help you feel connected and stay up-to-date with the latest advances in treatment and research for neurological disorders. The following groups are resources for you.

Canadian Association of Genetic Counsellors

CAGC can provide information about the benefits of genetic counselling and help you find a local genetics clinic to access a genetic counsellor in Canada.

Global Genes

Global Genes is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

Genetic Information Nondiscrimination Act (GINA)

The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information.

Child Neurology Foundation

The Child Neurology Foundation works to create and strengthen connections between members of the child neurology community. Their goal is that patients and their families, physicians, other healthcare providers, and advocacy and industry partners will work together to improve the lives of children with neurological disorders so that each may reach their full potential.

The Arc

The Arc is the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.

Epilepsy Foundation

The Epilepsy Foundation provides information, community and resources about epilepsy.

Talk About Curing Autism (TACA)

Talk About Curing Autism (TACA)

TACA is dedicated to educating, empowering and supporting families affected by autism. TACA helps to strengthen the autism community by connecting families and the professionals who can help them, allowing them to share stories and information to help improve the quality of life for people with autism.

Rettsyndrome.org

Rettsyndrome.org

To accelerate full spectrum research to cure Rett syndrome and empower families with knowledge and connectivity.