Welcome to Rare Disease Day: An Interview with a NORD Representative

February 28, 2021
Jonathan Alicea

Jonathan Alicea is an assistant editor for HCPLive. He graduated from Princeton University with a degree with English and minors in Linguistics and Theater. He spends his free time writing plays, playing PlayStation, enjoying the company of his 2 pugs, and navigating a right-handed world as a lefty. You can email him at jalicea@mjhlifesciences.com.

Lisa Sarfaty, director of strategic planning for the National Organization for Rare Disorders, speaks on the role of the organization and the importance of the Rare Disease Day campaign.

Today is Rare Disease Day 2021, an opportunity for advocates, experts, and the healthcare community at large to come together (virtually) in solidarity for those affected by rare disorders.

Founded by the European Organisation for Rare Disorders (EURODIS), the annual observance aims to raise awareness for such diseases and promote access to treatment, medical representation, and continued research.

There are more than 7000 rare diseases affecting 25-30 million individuals in the United States. Further, more than half of those suffering from a rare disease are children.

As such, this day is not just a national and international effort to better educate the public and decision-makers, it is also a personal campaign for the millions of families that have struggled to receive proper diagnoses and the right information.

The National Organization of Rare Disorders (NORD), the premier organization and official sponsor of Rare Disease Day in the United States, plays a critical role in this campaign to improve the lives of these families and drive advancement in healthcare.

Lisa Sarfaty, director of strategic planning for NORD, spoke with HCPLive® about the organization, describing its role in the healthcare community, its campaign efforts, as well as its plans for observing this critical day during a unique year.

“The success of 2021 is that there will probably be events in every single state being held virtually because it’s more accessible,” she said.

She encouraged healthcare providers to get involved, connect with their organization, and participate in as many as activities and virtual events as possible.

Check back here and on social media as the HCPLive® team covers Rare Disease Day 2021 through its multimedia offerings.


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