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September 10, 2020

TOPIC: Press Releases, Featured News, Patients & Members, Research, Advocacy, Industry

2020 NORD Summit to Feature Leading Experts in Public Policy, Patient Advocacy, Rare Disease Research and Regulatory Science

Posted by Laura Mullen

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 broad-ranging topics with speakers of unparalleled expertise for the 2020 NORD Rare Diseases and Orphan Products Breakthrough Summit, taking place… Read More

September 4, 2020

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020

#RareCancerDay is September 30! NORD will share facts, information and patient stories throughout the month.

Posted by Laura Mullen

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 Coalition, which is composed of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living… Read More

September 1, 2020

TOPIC: Featured News, Medical, Advocacy, Newborn Screening

September is Newborn Screening Awareness Month

Posted by Laura Mullen

A Personal Reflection from Stephanie Cozine, Delaware Rare Action Network Ambassador

Did you know that your baby is screened for different diseases depending on which state you live in?  That it’s possible your state doesn’t screen for a disease that it is recommended to? Do you know what your newborn is screened for and how?

I knew that my baby was… Read More

August 28, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Head of the Herd

Head of the Herd: Deb Ayres, President, The Avalon Foundation

Posted by Laura Mullen

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 years old, she started treatment for HPP and it was really challenging for her. The treatment can be incredibly painful and have a lot of adverse effects, and you don’t really see… Read More