Published 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 27, 2020 by NORD
There are five steps in the drug development process, which are designed to help ensure that potential new therapies are both safe and effective. Developing medical products for rare diseases encounters …
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 17, 2020 by NORD
The COVID-19 pandemic has had a huge impact on the rare disease community. NORD has heard from countless patients over the last few months about how this crisis has added to the …
Continue reading “NORD Releases Four Guiding Principles on Telehealth Issues”
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 August 12, 2020 by NORD
#NORDinthenews NORD is mentioned as an information source in “10 Rare Autoimmune Diseases That Don’t Get Enough Attention,” an article appearing in Parade.com’s “Healthy Now” column today. Parade.com is the …
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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 …
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Read morePublished July 23, 2020 by NORD
Washington, DC, July 23, 2020—In response to the unprecedented challenges rare disease nonprofit organizations are currently facing, the National Organization for Rare Disorders (NORD®) today announced nineteen seed grant recipients of its COVID-19 Rapid Response Leadership Series program. The awards will assist patient …
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… …
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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 …
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