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December 20, 2021

TOPIC: Medical, Patients & Members, Research

Helping Rare Disease Patients: A Conversation with Dr. Neilan about the Rare Disease Centers of Excellence Program

Posted by Jennifer Huron

In November, NORD announced the launch of its Rare Disease Centers of Excellence program, which aims to improve medical care for people living with rare diseases. The program has ambitious goals, including to help to shorten the time to diagnosis, to inform and establish treatment protocols where they do not currently exist, to facilitate more equitable access to… Read More

December 17, 2021

TOPIC: Research, RDCA-DAP

The Importance of Patient Voices and Data Analytics

Posted by Maia Craig

NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative.  

The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of what patient-focused drug development is and how the patient voice is incorporated into… Read More

December 15, 2021

TOPIC: Press Releases, Advocacy, RDACs

Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

Posted by Rohan Narayanan

Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC

Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare… Read More

December 14, 2021

TOPIC: Get Involved, Rare Disease Day

How to Light Up for Rare – Rare Disease Day 2022

Posted by Maia Craig

Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! 

As the US sponsor for Rare Disease Day, NORD is leading the call to light up the country in rare disease colors and unite both the rare disease community and the country as a whole. The more buildings, landmarks and monuments illuminated, the greater the impact! The goal of Light Up for… Read More

December 8, 2021

TOPIC: NORDPod

The 2021 NORD Breakthrough Summit

Posted by Valaree DonFrancesco

Today’s extra-long, extra-special BONUS episode is brought to you from the 2021 NORD Breakthrough Summit. Every year, NORD hosts its flagship conference in October to discuss what’s new, relevant, and on the horizon in the rare disease space. The session we’re featuring is “Designing Trials for Inclusivity, Equity, and Engagement,” The discussion addresses health care inequities and what we… Read More