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
TOPIC: Medical, Advocacy, Get Involved
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
TOPIC: Medical, Members, Research
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
TOPIC: Press Releases, Medical, Research
Washington, DC, November 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
TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer
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
