Written by Lisa Sencen on April 18, 2018
- Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional… Read More
After months of debate, Congress passed an omnibus spending bill last week to fund the government through September 30, 2018. Within this legislation, there are both exciting investments in critical programs for the rare disease community as well as disappointing policy omissions from the final package.
For example, we had greatly… Read More
In advance of today’s Members-Only Webinar with the Director of NIH NCATS, Dr. Christopher Austin, Swapna Kakani, a summer intern with NORD, wrote the article below highlighting her experience in June at the NIH NCATS Day – Partnering with Patients for Smarter Science. We look forward to… Read More
Washington, D.C., July 7, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Bosma arhinia microphthalmia (BAM) syndrome. This new resource is available free online to individuals around the world.
As the primary advocacy… Read More
#KnowYourHeart to Understand Heart Disease in Your Family
By Lisa Yue, Founding Executive Director of Children’s Cardioymyopathy Foundation, a NORD Member Organization
Every week, 25 children in the United States… Read More