Today’s guest blogger is Peter L. Saltonstall, NORD’s President and Chief Executive Officer. He has over 30 years of healthcare experience in both for-profit and not-for-profit environments. Through his career, he has been committed to improving the healthcare system to benefit patients. NORD’s website is www.rarediseases.org.
Friday February 28 is Rare Disease Day. On this day, we within the rare disease community educate the public that 30 million Americans have a rare disease, and that we need to work together to support research for new treatments and access to needed medications and services.
I hope that you and everyone reading this blog will spend at least a few moments on February 28 thinking about the challenges faced by people with a rare disease and the need to support research and access.
I am honored to serve as President and CEO of the National Organization for Rare Disorders (NORD). NORD was founded 31 years ago to bring together organizations that represent patients with rare diseases. We provide a full range of services for the rare disease community – public policy advocacy, patient assistance programs, education, and support for research.
You probably know someone with a rare disease, or with a family member who has a rare disease. Even though each individual disease is rare, the cumulative number of 30 million represents nearly 10% of the American population. Most of these 7,000 rare diseases are genetic and are diagnosed in children.
FDA has approved 450 orphan drugs to help treat these diseases. One of every three new drugs approved by FDA in recent years has been for a rare disease. Many people with a rare disease can lead relatively normal and very productive lives. This is the kind of progress that we seek to continue.
I ask you to consider how you can support our efforts. We are a charity and always welcome contributions. But what I really want is your time and commitment.
We are on the cusp of major advances in disease knowledge and management. The day when all rare diseases will have effective treatments is far off, but this is the goal we are working toward. Rare Disease Day is a good day for you to join our journey.