World Rare Disease Day 2016 Highlights Awareness and Advocacy
February 26, 2016
FOR IMMEDIATE RELEASE
Hosts Julie Moran and Olga Villaverde sit down with Global Genes and medical experts on behalf of Shire to discuss the annual observance of rare diseases and the families that are affected.
(POMPANO BEACH, Fla. – PR LOG – February 26, 2016) The Balancing Act® will recognize World Rare Disease Day with a special Behind the Mystery: Rare and Genetic Series segment on Hunter syndrome, as well as a look at Global Genes’ Advocacy Summit and Gala. The episode airs Monday, February 29, 2016 at 7:30 a.m. (ET/PT) on Lifetime®, with an encore presentation on Monday, March 7, 2016.
Held on the last day of February, World Rare Disease Day is an annual observance dedicated to raising awareness of rare diseases and improving access to medical representation for individuals with rare diseases, as well as their families. The Balancing Act is proud to support the movement’s 9th year, with help from the following partners:
Raising Awareness for Hunter Syndrome – sponsored by Shire
Finding an underlying cause to a child’s long list of illnesses and repeat visits to the pediatrician can be tough – but pin-pointing the problem can also be a huge relief. Dr. Barbara Burton, MD, Professor of Pediatrics, Northwestern University; Dr. David Molter, Professor of Otolaryngology, Washington University School of Medicine, at St. Louis; Carrie Dunn, a parent/caregiver and her son, Jackson Dunn-Kraus – who suffers from Hunter syndrome – join The Balancing Act to discuss the disease, a serious genetic disorder that primarily affects males. Hunter syndrome is difficult to diagnose because some of the symptoms like ear infections, adenoidectomies and hernias can be common in children. Finding a doctor who can help recognize the particular combination of symptoms seen in this rare disease is critical, so Shire aims to raise awareness, with the hope of improving the diagnosis journey for patients and their families. For more information, visit www.hunterpatients.com by Shire.
Shining the Spotlight on Rare Diseases – with Global Genes
Even if you’re not affected by a rare disease today, the realities of human genetics suggest that you, your child or a loved one could wake up tomorrow with a different reality – gradual or sudden onset of mysterious symptoms; second, third and fourth opinions searching for answers; sleepless nights and a critical race against time. This is the fight that grips the hearts of families, researchers, medical experts and treatment developers across the country. On this episode of The Balancing Act, Behind the Mystery pays tribute to the fight for rare disease advocacy, awareness, treatment, patient support, and even cures. Viewers will also get a backstage pass to the 4th Annual Global Genes Summit & Gala, held in beautiful Huntington Beach California, where Hollywood’s A-List comes out to pay tribute to the cause. Go to www.globalgenes.org for more information.
About Behind the Mystery
Behind the Mystery: Rare and Genetic Series was created by Senior Producers Carri Levy and Molly Mager. Originally launched four years ago, the series aims to introduce and unite patients, physicians and scientists in order to revolutionize the way the health care system works for the Rare and Genetic Minority. By combining research, education and opportunities on one stage, Behind the Mystery hopes to inspire, connect and guide patients and families as they work towards finding treatments and a cure.
About The Balancing Act®
Entering its 8th season, The Balancing Act continues to empower women in all aspects of their lives. The mission at The Balancing Act is simple – to help today’s modern woman balance it all by bringing them positive solutions to enrich and empower them. Entertaining, educational and trusted by women, viewers can tune in to America’s premier morning show The Balancing Act on weekday mornings Monday through Friday at 7:30 am (ET/PT) on Lifetime television. For additional information or to view a segment visit: www.thebalancingact.com. To learn more about the partnership with World Rare Disease Day, go to www.thebalancingact.com/rare.
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