When the Patient-Focused Drug Development (PFDD) Initiative was first announced as part of the 2012 PDUFA reauthorization, many patient organizations expressed concern that the initiative’s public meetings would focus on …
On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.
Thanks to the support of our partners and donors, NORD has launched new initiatives that empower the rare disease community in every state and strengthen the patient voice in Washington D.C.
Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related …
Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …