On Wednesday, Nov. 15, Evenings with Genetics, a speaker series hosted by Baylor College of Medicine and Texas Children’s Hospital, will host “Partners in Progress: Families and Scientists Catalyze Research for Rare Diseases,” a panel discussion about forging partnerships to advance research into rare diseases.
The panel will consist of national leaders from family support organizations and scientists who have fostered successful partnerships and obtained research funding for various rare diseases. During the discussion, panelists will cover first steps, challenges and successes in becoming principal investigators on studies focused on their child or a family member’s disorder.
Members of the panel include Dr. Brendan Lee, chair of molecular and human genetics at Baylor, Cynthia Le Mons, executive director of the National Urea Cycle Disorders Foundation, Tracy Hart Smith, chief executive officer of the Osteogenesis Imperfecta Foundation, and Jill Chertow Franks, president of the Propionic Acidemia Foundation. The discussion will be moderated by Dr. Lindsay Burrage, assistant professor of molecular and human genetics at Baylor.
“The work of advocacy organizations like the National Urea Cycle Disorders Foundation and the Osteogenesis Imperfecta Foundation are essential for advancing research and care for all rare disease patients and families. Their impact on the broader national research and healthcare agenda is enormous,” said Lee, who also is the Robert and Janice McNair Endowed Chair and professor of molecular and human genetics at Baylor.
The Evenings with Genetics series offers current information regarding care, education and research as they relate to genetic disorders and encourages networking within the community by connecting patients and their families with others in similar situations.
The program is free and open to the public, but registration is required. The seminar will be held at the Children’s Museum of Houston, 1500 Binz St., 77004. Light refreshments will be provided beginning at 6:30 p.m., and the seminar will begin at 7 p.m. For more information, please call 832-822-6523 or visit the event’s registration page.