Blogs

Behind the Mystery Goes Behind the Scenes at World Orphan Drug Conference

July 9, 2014

AIRING ALERT: Friday, July 11th at 7:00 a.m. (ET/PT).

Out of the 7000 rare diseases only 400 have treatments. The fifth annual World Orphan Drug Congress USA was held in Washington D.C. recently to bring together leaders, doctors, patients and advocates who are ultimately striving to find new treatments for the millions of people worldwide who suffer from rare diseases. The Balancing Act was on hand to film the event dedicated to fostering partnerships and collaboration, and talk to key influencers and advocates, including their own CEO Tom Deters who discussed the importance of awareness here and around the world. 


This segment is part of The Balancing Act’s ongoing series “Behind the Mystery: Rare and Genetic Diseases”. https://www.terrapinn.com/conference/world-orphan-drug-congress-usa/index.stm

 

 

Learn more about the segment here.

About Behind the Mystery

The road to diagnosis and treatment for patients with rare and genetic diseases is one with very little navigation. With over 7,000 rare diseases and one in every ten people diagnosed – chances are you know someone, or may even BE someone with a rare disease.

When fewer than 200,000 patients struggle with a disease– who serves to educate, empower, and lead the sick to the right doctors, the right medications and the fastest road to relief?

Behind the Mystery of: Rare and Genetic Diseases is a series produced with the intention of introducing and uniting patient, physician, and scientist with research, education and opportunity to revolutionize the way our health care system works for the Rare and Genetic Minority.

By partnering with The Global Genes Project, The Balancing Act is able to provide available support to patients diagnosed with rare and genetic diseases, and to give hope with news of clinical trials and new treatments. Together, we can begin a new wave of advocacy and support for the rare community.

The Balancing Act supports and celebrates patient advocacy groups and industry leaders, who inspire connect and guide patients as they move forward through their journey towards treatments and a cure.

Stay Connected

Sign up for updates straight to your inbox.

FacebookTwitterInstagramYoutube