Global Genes Summit Unites Rare Disease Voices

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 →

Rare Disease is Bipartisan

By Laura Edwards

I don’t talk much about my political views on social media or elsewhere. But rare disease is bipartisan. Rare disease traverses not only politics but also religion, race, gender, age, ethnicity and nationality. Rare disease affects us all.

Today, North Carolina House Bill 823 passed unanimously by a vote of 106-0 in the House. The bill, entitled “Establish Advisory Council on Rare Diseases,” is on its way to Governor McCrory, who now has 30 days to sign the bill into law. continue reading →