Global Genes Summit Unites Rare Disease Voices

Published: September 28, 2016  ~   0
By Judy Mayer

You might assume that a summit dedicated to rare disease would be a negative experience, perhaps even bordering on tragic. You would be wrong.

The Global Genes RARE Patient Advocacy Summit held in Huntington Beach, California, on September 24-25 illustrates the positive energy that defines the rare disease community. Some people showed up in wheelchairs, while others had masks across their mouths and noses. One teenage girl brought her service dog, and one woman brought her oxygen tank.

While rare diseases create a seemingly endless variety of challenges, the summit participants all share the determination to help others and to leave no stone unturned to improve the lives of rare disease patients.  continue reading →

Why World Rare Disease Day Matters

Published: January 28, 2015  ~   0
By Laura Edwards

There are a million special recognition and awareness “days.” I worked in healthcare for eight years. Many of the patients and families and doctors and nurses and service line leaders I worked with throughout those eight years had a day that was special to them because it recognized not their disease or condition, but the courage and strength it takes to face the disease each day and the determination and belief in miracles it takes to fight for a better tomorrow. Even if some days are so dark you can’t see what’s coming. continue reading →