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Texas Rare Disease Day Virtual Event

February 28 @ 2:00 pm - 3:30 pm

Texas Rare Action Network and Baylor College of Medicine/Texas Children’s Hospital Genetics invite you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate Texas legislators and the general public on the challenges faced by rare disease patients and their families. We will explore how the formation of a Rare Disease Advisory Council (RDAC) could address the needs of those living with a rare disease in Texas by providing stakeholders an opportunity to make formal recommendations to state leaders about the most important issues they face, including the need for increased research and awareness, knowledgeable health care providers, and timely access to affordable diagnostics, treatments and cures.

Organizer

NORD Texas Rare Action Network
Email:
action@rarediseases.org
Website:
RareTX.org

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