National Organization of Rare Disorders: Raising Awareness of Rare Disease Day 2023

 

Do you wish to be heard?

Recently PR Newswire announced that on the 28th of February 2023, NORD and the worldwide community of rare disorders will be raising awareness by celebrating Rare Disease Day.

Over twenty-five million people in the U.S. are affected by rare diseases and fifty percent are children. Ninety percent of rare diseases do not have an FDA-approved medication.

It is therefore essential that the public be made aware of the urgent need for universal support.

Peter Saltonstall, NORD CEO, talks of the courage exhibited by patients and their families every minute of every day. He asks that patients and their families share their stories with the public and highlight them on Rare Disease Day.

What is the Rare Disease Day Campaign?

Rare disease patients and their families are the full force behind the international rare disease campaign. The goal is to inform the public of the challenges facing over three hundred million people worldwide who are affected by over seven thousand rare diseases.

NORD is preparing the following opportunities to raise awareness:

The Virtual Kick-off

NORD held a virtual webinar for the public on Wednesday, the 30th of November 2022. Sharing opportunities that support the rare disease community were announced. Individuals, youth and schools, volunteers, and corporations were among the groups to register.

Patient Stories

NORD is on hand to feature stories on its social media and website of the many challenges faced by rare disease patients. People are encouraged to share their health history to help other patients.

Light Up the World in February 2023

NORD, your official US Rare Disease sponsor, encourages everyone to illuminate the United States during the month of February 2023 in green, pink, purple, and blue for the purpose of uniting the community and country and making a significant impact. Information about the Light-up program for monuments, landmarks, homes, and commercial buildings is available here: https://rarediseases.org/.

NORD and Show Your Stripes Program

The zebra is the official rare disease symbol in the USA. NORD suggests wearing striped outfits on Rare Disease Day and becoming a participant in the global conversation by showing support through social media. Opportunities and events to show your support are being showcased on NORD’s Rare Disease website throughout 2022 and 2023.

NORD is the leading patient advocacy organization in the care, policy, and treatment of approximately thirty million Americans challenged by rare diseases.

NORD has made a commitment to identifying, treating, and curing rare diseases via its educational programs, advocacy, patient services, and research. Please visit https://rarediseases.org/for more information.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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