Voices of Rare Cancer: Jeremy’s Story
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In this week’s Voices of Rare Cancer feature, Jeremy shares his experience with pseudomyxoma peritonei (PMP), and the role genomic testing has played in his treatment.
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Published September 11, 2020 by NORD
In this week’s Voices of Rare Cancer feature, Jeremy shares his experience with pseudomyxoma peritonei (PMP), and the role genomic testing has played in his treatment.
Read morePublished September 10, 2020 by NORD
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 …
Read morePublished September 4, 2020 by NORD
Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer …
Read morePublished August 28, 2020 by NORD
At the Head of the Herd is… Deb Ayres, President, The Avalon Foundation. Deb advocates for… patients with pediatric hypophosphatasia (HPP) and their families. Deb is located in… Toledo, Ohio. How Deb got here… When my daughter Avalon (“Avie”) was ten …
Continue reading “Head of the Herd: Deb Ayres, President, The Avalon Foundation”
Read morePublished August 25, 2020 by NORD
“Since 1906, FDA’s dedicated career employees have worked tirelessly to ensure that Americans have access to the safest supply of products we rely on every day, including food, drugs and …
Continue reading “NORD CEO Affirms Science Should Guide FDA’s Work”
Read morePublished August 14, 2020 by NORD
At the Head of the Herd is… Katie Wright, Director, The VEDS Movement (a division of The Marfan Foundation) Katie advocates for those living with… Vascular Ehlers-Danlos Syndrome (VEDS) How …
Read morePublished July 31, 2020 by NORD
At the head of the herd is… Seth Rotberg, Co-Founder, Our Odyssey Seth most frequently checks his… Twitter or Instagram accounts Seth advocates for… Young adults between the ages of …
Continue reading “Head of the Herd: Seth Rotberg, Co-founder, Our Odyssey”
Read morePublished July 17, 2020 by NORD
At the head of the herd is… Taylor Kane, Founder and President, Remember the Girls Taylor advocates for those living as… Carriers of all X-linked diseases Taylor is located in… …
Continue reading “Head of the Herd: Taylor Kane, Founder and President, Remember the Girls”
Read morePublished July 16, 2020 by NORD
Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to NORD and EURORDIS-Rare Diseases Europe. These grants …
Read morePublished July 6, 2020 by NORD
During the pandemic, many rare disease patients have been diligent about staying home as social distancing continues to be critical to minimize the spread of the coronavirus; as a result, …
Continue reading “The NORD Policy Team Wants to Hear About Your COVID-19 Telehealth Experience”
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