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August 18, 2022

TOPIC: Medical, Members

Solidify Your Legacy for Make a Will Month

Posted at August 8, 2022 08:12 am by Rohan Narayanan
August is Make a Will Month

August is national “Make a Will Month,” a critical moment for planned giving and making a lasting impact.  

Every adult – regardless of age – should take the time to create a will to ensure that any final wishes they may have are executed in the way they desire. Creating a will this month can offer peace… Read More

July 12, 2022

TOPIC: Medical, Advocacy, Get Involved

Take Action: Share Your Story with the White House and Help Explain Why Medical Nutrition Is Critically Important

Posted at July 7, 2022 08:00 am by Valaree DonFrancesco

Many people with rare diseases require medical nutrition prescribed by a healthcare provider to prevent permanent disability and mortality, allow for normal growth in children and adults, or provide adequate nutritional intake. Despite medical necessity, many insurers do NOT cover medical nutrition. As a result, people with certain rare diseases and their families are left to face the extraordinary cost of their… Read More

December 20, 2021

TOPIC: Medical, Members, Research

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

Posted at December 12, 2021 08:00 am 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

November 4, 2021

TOPIC: Press Releases, Medical, Research

Committing to Care, Access, Equity and Research: NORD Announces 31 Rare Disease Centers of Excellence

Posted at November 11, 2021 08:30 am by Rohan Narayanan

National Organization for Rare Disorders® (NORD) provides new designation to medical centers to define standards for high-quality specialized care for rare disease patients

Washington, DCNovember 4, 2021— Today, the National Organization for Rare Disorders (NORD) announced 31 NORD Rare Disease Centers of Excellence across the United States, establishing a unique network of medical centers, clinics, and institutions to advance care and expand access for rare disease patients. The program is being led by NORD to promote outstanding treatment for rare disease patients regardless of disease or geography, elevate collaboration, improve standards of care, advance research, and… Read More

September 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted at September 9, 2021 08:00 am by Maia Craig

David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was… Read More