Houston's first rare disease day debuts at The Health Museum


Texas Children's Hospital and Baylor College of Medicine educate families on rare diseases

HOUSTON (Feb. 11, 2016) - On the last day of February, millions of people across the U.S. will join the National Organization for Rare Disorders (NORD) in observing Rare Disease Day. Houston will host its inaugural event Monday, Feb. 29 from 4 to 8 p.m. at The Health Museum. Free and open to the public, this educational experience is a joint effort by Texas Children's Hospital and Baylor College of Medicine to showcase 20 rare disease organizations and provide information and resources to families in need.

Approximately 1 in 10 people in Texas live with a rare disease and nearly 1 in 6 children in the U.S. have a developmental disability, many of which are caused by a rare genetic disorder. A disease is considered rare if it affects less than 200,000 Americans. There are nearly 7,000 rare diseases, and according to the National Institutes of Health (NIH), there are approximately 30 million Americans with a rare disease.

Individually these conditions are rare, but collectively, they are common and most of us have been impacted in some way by someone with a rare condition.  However, families frequently feel isolated and alone in caring for their child or adult family member. By raising local awareness about rare diseases, Texas Children's and Baylor show their support and solidarity with these families, while also providing hope for positive changes to come. These conditions are often lifelong and many are terminal. Moreover, approximately two-thirds of those affected with a rare disease are children.

People with rare diseases often have difficulty getting a proper diagnosis, finding accurate, current medical information, identifying treatment options and getting medical research funding for their condition. Of the thousands of rare disorders that are diagnosed in childhood, some of the top rare diseases include Velocardiofacial/DiGeorge Syndrome, Fragile X Syndrome, Phenylketonuria (PKU), Osteogenesis Imperfecta (“brittle bone disease”) and Sickle Cell Disease.

Rare Disease Day at The Health Museum will feature approximately 20 informational booths from Rare Disease Support organizations from 4 to 8 p.m. In addition, Dr. Christian Schaaf, assistant professor of molecular and human genetics at Baylor College of Medicine, and parent advocate Lace Mitchell will present a 6:30 p.m. seminar on “Social Media and Rare Diseases,” followed by a 7 p.m. “Updates in Testing for Rare Diseases” seminar by Dr. Carlos Bacino, chief of genetic services at Texas Children’s and professor of molecular and human genetics at Baylor.

Some of the rare disease organizations hosting booths at Rare Disease Day include Houston Area  Angelman Syndrome Association, Turner Syndrome Society, Noonan Syndrome,  2q23.1 deletion/duplication disorders, Dysautonomia Warriers and the UT Dysautonomia Center for Excellence, Mowat-Wilson Syndrome Foundation, Texas Neurofibromatosis Foundation, Phelan - McDermid Syndrome Foundation, Pitt Hopkins Syndrome, Potocki-Lupski Syndrome Foundation, The Marfan Foundation, Rett Syndrome.org, Sickle Cell Association of Houston, Texas Chargers, The Mayor’s Office for People with Disabilities, Children with Special Healthcare Needs of Dept. of State Health Services, and the Undiagnosed Disease Network program. 

Along with the event's educational resource booths and seminars, free admission provides access to The Health Museum's multiple exhibits, all with bilingual signage, such as The Amazing Body Gallery, YOU:  The Exhibit, To MyPlate and Beyond, and the DeBakey Cell Lab, the state's largest cell lab with seven hands-on bench experiments. Guests planning to attend are asked to register in advance at Baylor College of Medicine or call 832-822-4182. 

The Health Museum is located in the Museum District at 1515 Hermann Drive, 77004.   For more information, please visit www.thehealthmuseum.org or call 713-521-1515.

About Texas Children’s Hospital

Texas Children’s Hospital, a not-for-profit health care organization, is committed to creating a healthier future for children and women throughout the global community by leading in patient care, education and research. Consistently ranked as the best children’s hospital in Texas, and among the top in the nation, Texas Children’s has garnered widespread recognition for its expertise and breakthroughs in pediatric and women’s health. The hospital includes the Jan and Dan Duncan Neurological Research Institute; the Feigin Center for pediatric research; Texas Children’s Pavilion for Women, a comprehensive obstetrics/gynecology facility focusing on high-risk births; Texas Children’s Hospital West Campus, a community hospital in suburban West Houston; and Texas Children’s Hospital The Woodlands, a second community hospital planned to open in 2017. The organization also created the nation’s first HMO for children, has the largest pediatric primary care network in the country and a global health program that’s channeling care to children and women all over the world. Texas Children’s Hospital is affiliated with Baylor College of Medicine. For more information, go to www.texaschildrens.org. Get the latest news by visiting the online newsroom and Twitter at twitter.com/texaschildrens.