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May 22, 2020

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

Head of the Herd: Emile Najm, KAT6A Foundation

Posted by Laura Mullen

At the head of the herd is… Emile Najm, Chief Executive Officer, KAT6A Foundation

Emile most frequently checks his…  Facebook account

Emile advocates for those living with… A rare syndrome resulting from a mutation in the KAT6A gene.

Emile is located in… West Nyack, New York

How Emile got here… Emile Najm’s son was diagnosed with KAT6A syndrome in 2017. Since then,… Read More

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May 21, 2020

TOPIC: Press Releases, Featured News, Patients & Members, COVID-19

NORD Supports Rare Disease Nonprofits Impacted by COVID-19 with New Rapid Response Leadership Series

Posted by Laura Mullen

Washington, DC, May 21, 2020—The National Organization for Rare Disorders (NORD®) today launched the COVID-19 Rapid Response Leadership Series, a program providing resources to support rare disease nonprofit groups in facing challenges brought on by the current pandemic.

NORD recently surveyed the rare disease community, collecting feedback from nearly 800 patients and caregivers on the… Read More

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May 19, 2020

TOPIC: Press Releases, Featured News, Research

NORD Awards Eleven New Grants in Eight Disease States for Rare Disease Research

Posted by Laura Mullen

Washington, DC, May 19, 2020—The National Organization for Rare Disorders (NORD®) has announced new awards through its Rare Disease Research Grant Program, which provides funding to qualified researchers for translational or clinical studies related to the development of new diagnostics or treatments for rare disease. Since the program’s launch in 1989, NORD grants have led… Read More

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May 13, 2020

TOPIC: Featured News, Patients & Members, Research, Advocacy

NORD to Host an Externally-led Patient-Focused Drug Development Virtual Meeting on Krabbe Disease, Thursday, October 29

Posted by Laura Mullen

NORD, KrabbeConnect and Partners for Krabbe Research invite you to register for an externally-led Patient-Focused Drug Development (EL-PFDD) virtual meeting on Krabbe disease, taking place Thursday, October 29, 12:30-4:30pm ET. Patients and caregivers impacted by Krabbe disease who are interested in participating at the virtual meeting as panelists should complete this Read More

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May 12, 2020

TOPIC: Press Releases, Featured News, Patients & Members, COVID-19

In Support of Rare Disease Patients Impacted by COVID-19, NORD Launches Premium and Limited Medical Relief Program

Posted by Laura Mullen

Washington, DC, May 12, 2020— United with more than 25 million Americans living with rare diseases, the National Organization for Rare Disorders (NORD®) today launched its COVID-19 Premium & Medical Relief Program to provide vital support to members of the rare disease community affected by the COVID-19 pandemic. The program will assist those with a… Read More

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Alone we are rare. Together we are strong.®