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Archives for: September 28th, 2022

Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Written by Rohan Narayanan on September 28, 2022

Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is observed on September 30 to highlight the challenges patients with rare cancers face… Read More

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Written by Valaree DonFrancesco on June 11, 2021

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling… Read More

Ray Stevens is Taking Rare Disease Awareness to New Heights

Written by Valaree DonFrancesco on April 7, 2021

In 2001, Ray was inspired by a family he met whose daughter was diagnosed with phenylketonuria (PKU). He translated his academic knowledge into clinical treatments and was able to help create two new medicines for this devastating rare disease. Then in 2007, his daughter, who was four years old at… Read More

High-School Students Raise Awareness

Written by admin on May 29, 2013

Today, members of the NORD staff had the opportunity to meet a group of high-school advocates who are already making a difference to help raise awareness for rare diseases. (more…)