Webinar Participants

Whose partnering with EGL?
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Batten Disease Support & Research Association

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BDSRA is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America.

BDSRA is the largest support and research organization dedicated to Batten disease in North America.

"We're dedicated to funding research for treatments and cures, I'm thrilled to partner with EGL in its efforts."

Margie Fraizer Batten Disease Support and Research Association (BDSRA).

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Dr. Raja is a thoracic surgeon and has performed more than 3,500 surgeries throughout his career, including 2000 thoracic surgeries.

“Thoracic surgery has become an integral part of my life. It’s what I live and breathe on a daily basis and that’s what makes me a better doctor.”

Dr. Siva Raja Cleveland Clinic

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RareConnect - Connecting Rare Disease Patients Globally

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A safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. RareConnect partners with the world's leading rare disease patient groups to offer global online communities allowing people to connect around issues which affect them while living with a rare disease.

Our team works with patients and patient groups to host online communities and discussions for people living with a rare disease.

"We're excited to partner with EGL and discuss Rare Disease Day from a global perspective."

 

Robert Pleticha RareConect, Eurordis Initiative

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