Each year since 2009, the National Institutes of Health (NIH) Clinical Center and National Center for Advancing Translational Sciences (NCATS) has hosted Rare Disease Day at NIH to participate in the global observance. This year, we attended the event and heard several inspiring presentations from a range of rare disease stakeholders.
rare disease day
On February 28, rare-disease communities around the world come together to advocate for an increase in research focused on rare diseases. When it comes to clinical research for rare and orphan diseases, the relationship with the patient and advocacy groups is critical to success.
Today, rare-disease communities around the world are coming together to raise awareness for the roughly 7,000 different types of rare diseases and disorders. Shazia Ahmad, our Patient and Physician services rare-disease expert, will be attending Rare Disease Day at NIH to celebrate this year’s theme, “Patient Voice.”
On February 28, patient communities around the world will celebrate Rare Disease Day to raise awareness about rare diseases and their impact on patients’ lives.