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Medical Professionals, Special Education Instructors, Parents Invited to Participate in Rare Disease Symposium held at Children’s

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Medical Professionals, Special Education Instructors, Parents Invited to Participate in Rare Disease Symposium held at Children’s

 

BIRMINGHAM  – Children’s of Alabama will host the second annual Rare Disease Symposium  on Monday, March 16, at 8 a.m. in its Bradley Lecture Center (Children’s Harbor Building, 1600 6th Ave. S., Birmingham, 35233). The conference will celebrate Rare Disease Day, which is an international event created to raise awareness around uncommon conditions affecting children worldwide.  

The day-long conference is open to the public and hosted by the University of Alabama at Birmingham  Department of Genetics in conjunction with Children’s of Alabama. This year’s conference will offer a track for medical professionals and another for the community-at-large and will feature presentations geared to parents, special needs educators, social workers and medical professionals.

“The paradox of rare disorders is that collectively they are among the most common causes of chronic medical disabilities in children,” said Dr. Bruce Korf, M.D., Ph.D., chair of the UAB Department of Genetics.  “The rarity of individual conditions, however, makes it difficult for health professionals to remain up-to-date on advances in diagnosis and treatment, and often causes patients and families to feel that they must face daunting problems on their own. This conference will focus on the treatment of these rare diseases and will give medical professionals, educators and parents the tools they need to take care of special needs children.”

 The keynote speaker at the 2015 conference is Dr. Louis Kunkel, PhD, director of the Genomics Program at Boston Children’s Hospital. Dr. Kunkel is an internationally recognized geneticist and world-renowned researcher in the area of muscular dystrophies.

Topics for medical professionals will address the latest research and available FDA-approved therapies for rare and complex disorders such as Duchene muscular dystrophy, cystic fibrosis and neurofibromatosis as well as ethical and legal issues surrounding clinical genomic trials. Parents will hear from school representatives on how to develop and maintain individual educational plans and local accountants will provide financial planning advice.

Registration is now open and the cost to attend is $15. Complimentary lunch and parking are included with registration. Online registration is available atwww.childrensal.org/genetics. For more information or to request a printed registration form, e-mailhande@uab.edu.