Written by Jennifer Ryan on December 16, 2020
As a 2020 scholarship recipient, I was able to attend the NORD Rare Diseases and Orphan Products and Breakthrough Summit in October and to hear from inspiring patients, hard-working medical professionals and research experts. Specifically, I was very drawn to the “Unlocking the Power of Health Care Data” panel,… Read More
Written by Valaree DonFrancesco on October 9, 2020

Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted… Read More
Written by Valaree DonFrancesco on September 10, 2020

Washington, DC, September 10, 2020–At a time when it is vitally important for the rare disease community to come together, the National Organization for Rare Disorders (NORD®) has announced a program of broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases… Read More
Written by Valaree DonFrancesco on June 11, 2020

We are at a pivotal time in rare disease, one that requires new approaches and fresh perspectives in order to achieve real progress. Given the impact of the COVID-19 pandemic on clinical trials, drug development, and pharmaceutical innovation, connecting stakeholders and advancing meaningful dialogue is now more critical than ever… Read More
Written by Valaree DonFrancesco on March 6, 2020

At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation
Akiva most frequently checks his… https://www.facebook.com/Akiva
Akiva advocates for those living with… hyper IgM syndrome
Akiva is located in… New York, NY
How… Read More