Using Technology and Collaboration to Navigate the Rare Disease Journey: Parents, Caregivers Invited to Participate in Rare Disease Workshop at Children's of Alabama

BIRMINGHAM (Feb. 10, 2020) – Children’s of Alabama is hosting “Using Technology and Collaboration to Navigate the Rare Disease Journey,” a no-cost workshop for families and caregivers impacted by rare disease.

The workshop is Saturday, Feb. 22, from 8 a.m. to 3 p.m.in the Bradley Lecture Center at Children’s of Alabama (1600 7th Ave S, Birmingham, Alabama 35233). The workshop is presented by Children’s, the University of Alabama at Birmingham and Alabama Rare in honor of Rare Disease Day, a global awareness day for individuals living with rare diseases.

There is no cost to attend the workshop, but guests are asked to register at AlabamaRare.org. Free childcare will be provided in the Children’s Harbor Family Center, located in the hospital.

Session topics will address using social media to create and maintain an online support group; precision medicine; navigating a patient registry and using genomics and data to guide rare disease research.

The workshop coincides with an exhibition of selected paintings from the Beyond the Diagnosis collection. The paintings will be on display at Children’s of Alabama through mid March.Artists have donated their time and talents to paint rare disease patients for this groundbreaking exhibit. This exhibit travels to medical schools, research institutes and hospitals around the globe encouraging the medical community to look “beyond the diagnosis” to the patient.

There are approximately 7,000 different types of rare diseases and disorders. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. There are 30 million people in the United States living with rare diseases, and approximately 75 percent of those affected by rare diseases are children.

For more information, please contact Swapna Kakani of Alabama Rare at AlabamaRare@gmail.com.

Since 1911, Children’s of Alabama has provided specialized medical care for ill and injured children, offering inpatient and outpatient services throughout central Alabama. Ranked among the best pediatric medical centers in the nation by U.S. News & World Report, Children’s provided care for youngsters from every county in Alabama and 42 other states last year, representing more than 684,000 outpatient visits and more than 15,000 inpatient admissions. With more than 3.5 million square feet, Children’s is one of the largest pediatric medical facilities in the United States. It is a private, not-for-profit medical center that serves as the teaching hospital for the University of Alabama at Birmingham (UAB) pediatric medicine, surgery, psychiatry, research and residency programs. The medical staff consists of UAB faculty and Children’s of Alabama’s full-time physicians as well as private practicing community physicians.