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.
patients with rare diseases
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.
Shazia Ahmad, Director, Patient and Physician Services, participated in Rare Disease Day 2016 while attending the National Institutes of Health (NIH) earlier this month. In our latest blog post, she reviews three key insights from the event.
Rare-disease patients need special attention, not only upon therapy initiation, but throughout their entire therapy journey. UBC has the capabilities to start at the very beginning of this journey — transitioning patients from a trial drug to a commercialized product — and still provide high-touch care — coordinating pharmacy triage and beyond.
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.”
For rare-disease patients, a successful therapeutic journey is as unique as they are. Here is a look at some of the most pressing questions rare-disease patients face during their therapeutic journey.