Global Genes Celebrates World Rare Disease Day

Global Genes Project

30 million people in the United States are living with rare diseases…many of them children…and they can go undiagnosed for years.   Advances in human genome mapping is helping families get treatment faster, and Global Genes is an organization that connects families who are trying to cope. Join President and Founder Nicole Boice and Patient Ilana Jacqueline as they share their stories of hope and support.


The Balancing Act


RARE Disease Hope

Global Genes Joins Show to Celebrates Rare Disease Day on Feb. 28th

Did you know that 30 MILLION people in the United States are living with rare diseases? This equates to 1 in 10 American or 10% of the population.

Chances are that someone you know is living with one of these (over 7,000!) diseases.

It takes on average 8 years to find a diagnosis. Most patients visit over 10 different specialists and are misdiagnosed about 3 times. This is a problem. This creates a major strain on the families, the families financially and our healthcare system.

In many cases, this time to diagnosis and multiple misdiagnoses also lead to greater problems, increased disability and even death.

Global Genes is an advocacy group at the forefront of education and providing resources for those in the RARE community and connects families trying to cope:

  • The mission of Global Genes is to unify the international rare and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families.
  • •We encourage patients to share their personal rare disease story on our blog, http://www.globalgenes.com/blog.
  • To find an entire page dedicated to “Rare Facts” go to: http://globalgenes.org/rarefacts/
  • Viewers can join Global Genes and Rare Disease Legislative Advocates (RDLA) for scheduled events February 25th – February 28, 2014 in Washington DC.
  • The February 28th is World Rare Disease Day. Viewers can show their support by wearing denim or Global Gene’s signature denim ribbons.
  • Wear That You Care by purchasing a ribbon, pin, stickers, or other Global Genes “RARE” products on our site at http://globalgenes.org/shop/

Make sure to tune in on February 21st and 28th at 7:00 am (ET/PT) as The Balancing Act’s “Behind the Mystery: Rare and Genetic Diseases Series Celebrates RARE Disease Day on its Special on Feb. 28th 2014. Join President and Founder Nicole Boice and Patient Ilana Jacqueline as they share their stories of hope and support.

http://www.global genes.org


The Balancing Act® airing on Lifetime TV Focuses on Hope and Support for Rare Diseases

FOR IMMEDIATE RELEASE

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The Balancing Act® airing on Lifetime TV Focuses on Hope and Support for Rare Diseases, Non-24 Sleep-Wake Disorder, Caregiver Moms

Global Genes, Discount Medical Supplies, and Vanda Pharmaceuticals, Inc. Take Center Stage on February 21st Show

(Pompano Beach, FL – PR.Com/CISION – February 19, 2013) Popular morning show The Balancing Act® airing on Lifetime® TV focuses on hope and support for the RARE Disease community, caregivers and the little known Non-24-Hour Sleep-Wake Disorder, which affects up to 70 percent of people who are totally blind . Make sure to tune in on Friday, February 21st at 7:00 a.m. (ET/PT) as The Balancing Act hosts help jump start the day with animated conversation and trusted information to empower a woman’s life.

Don’t miss these featured segments taking center stage on The Balancing Act:

o Global Genes Celebrates World RARE Disease Day
30 million people in the United States are living with rare diseases – this equates to 1 in 10 American or 10% of the population. Global Genes is an advocacy support group at the forefront of education and providing resources for those in the RARE community, and connects families trying to cope. Join President and Founder Nicole Boice and Patient Ilana Jacqueline as they share their stories of hope and support during this “Behind the Mystery: Rare and Genetic Diseases” segment. This show will re-air February 28, World Rare Disease Day. http://globalgenes.org/

o Helping Caregiver Moms Stay Positive with Discount Medical Supplies
Caregivers of children with special needs know that some days can be very challenging…but there is hope, support and help. Join Julie Moran and Dr. Jon Segal, CEO of Discount Medical Supplies and a caregiver himself, as viewers learn more about the challenges America’s caregivers face each and every day, and what resources are available to them. The company also gives back to charities benefitting special needs children and others. http://www.discountmedicalsupplies.com/

o Non-24: When Night & Day are Out of Sync with Vanda Pharmaceuticals
It’s called Non-24-Hour Sleep-Wake Disorder (Non-24). People with Non-24 have periods of severely disrupted nighttime sleep and an overwhelming urge to sleep during the day, which may lead to a decrease in functionality. Non-24 is a serious, chronic circadian rhythm disorder that affects up to 95,000 totally blind Americans. , Many people impacted do not even know what they have, or do not realize that there is an underlying issue with their master body clock. Due to its cyclical nature and low awareness among physicians and patients, Non-24 is often misdiagnosed as insomnia or a mood disorder, leading to a delay in diagnosis or a misdiagnosis and inappropriate treatment. Join Dr. Helene Emsellem from the Center for Sleep & Wake Disorders, and Anthony, a father of four who lost his sight in an accident and began experiencing Non-24 symptoms, for this “Behind the Mystery: Rare and Genetic Diseases” segment. Together, they will discuss the journey to diagnosis, symptom management and the importance of patient-physician dialogue. http://www.Non-24.com
About The Balancing Act® airing on Lifetime Television
Now in its 6th year, The Balancing Act® continues to empower women in all aspects of their lives. The mission at The Balancing Act is simple – the show strives to help today’s modern woman balance it all by bringing them exceptional solutions to everyday problems. Entertaining, educational and trusted by women, viewers can tune in to America’s premier morning show The Balancing Act on weekday mornings at 7:00 am (ET/PT) airing on Lifetime television. For additional information or to view a segment visit: http://www.thebalancingact.com

For more information regarding O2 Media Inc. Branded Entertainment, Product Placement and TV Brand Integration go to: http://o2mediainc.com/Pages/187/Branded-Entertainment

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