Tuberous Sclerosis Alliance Announces New Global Partnership in Hungary
(4 months ago)
SILVER SPRING, Md: The Tuberous Sclerosis Alliance (TS Alliance) announced its newest Global Alliance, the Hungarian Foundation for Tuberous Sclerosis.
This partnership aims to facilitate local connections for individuals and families affected by tuberous sclerosis complex (TSC), raise revenue and increase awareness in Hungary. Affecting 1 million worldwide, TSC is a rare genetic disorder that causes tumors to form in vital organs; it's also the leading genetic cause of epilepsy and autism.
"Being a global affiliate of the TS Alliance is a great honor and opportunity for us to build a strong, visible and good advocacy community," said Imola Dankahazi, President of the Hungarian Foundation for Tuberous Sclerosis. "We look forward to collaborating on educational resources, research and care for individuals with TSC."
Officially launched in 2014 with the TS Alliance of Israel, the TS Alliance's Global Alliance program was created to address unmet needs within the global TSC community at the country level. This program provides the opportunity for the TS Alliance to share experiences and assist in the start-up or support of TSC-related organizations in other countries. A Global Alliance is a structured group of empowered and caring volunteers who work closely with the TS Alliance to facilitate local connections for individuals and families affected by TSC, raise revenue and increase awareness while supporting the mission of the organization. The TS Alliance also has formal partnerships with Tuberous Sclerosis Canada Sclerose Tubereuse and the TS Alliance of Mexico.
"The TS Alliance is excited to partner with this new organization in Hungary," said TS Alliance President & CEO Kari Luther Rosbeck. "We look forward to working with the Hungarian Foundation for Tuberous Sclerosis to advocate for people with TSC, provide educational and support programs, increase awareness and offer assistance with fundraising. Of course, the ultimate goal is to improve outcomes for everyone with TSC."
The TS Alliance is dedicated to finding a cure for tuberous sclerosis complex, while improving the lives of those affected. Founded in 1974, it works to improve quality of life for individuals and families affected by TSC by stimulating and sponsoring research; creating programs, support services and resource information; and developing and implementing public and professional programs designed to heighten awareness of the disease.