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Rare Diseases

Support Rare Disease Patients and Families by Participating in Rare Disease Day

Pamela K. Gavin, MBA

Chief Strategy Officer, National Organization for Rare Disorders

On the last day of February each year, the National Organization for Rare Disorders (NORD®) joins with patients, caregivers, and advocates around the globe to highlight the impact of rare diseases on the lives of more than 300 million people worldwide.

The goal of Rare Disease Day is to raise awareness of the many challenges rare disease patients and families face and bring to the forefront the need for ongoing funding and research toward treatments and cures. The first Rare Disease Day took place in 2008, with events in 18 participating countries. The awareness day grew from an initial European focus to a global event in 2009.

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The need for equity

This Rare Disease Day, we are shining a light on a critical issue that affects all but has special significance for our rare community: health equity. Simply put, health equity means that everyone is afforded a basic, fighting chance to live their healthiest life, because they have equal access to the medical expertise and support services necessary to do so. Attaining true equity requires us to address societal disparities that are hurdles to health, including discrimination and poverty. [

Rare disease patients in the United States have long been affected by a lack of health equity, mainly due to the challenges that come with having a condition that affects few people and is not well known amongst the medical community. Social and economic disparities only exacerbate the issues those living with rare diseases face every day.


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Breaking down barriers

Advocating for policies that ensure access to affordable, quality healthcare coverage is a critical component in addressing some of the barriers that vulnerable and underserved populations often face. Increasing participation by underrepresented populations in clinical trials and research is vital to the better understanding of rare diseases, as well as to expanding access to treatments and improving quality of life for patients. These are necessary steps on the road to health equity for all, including more than 25 million American men, women, and children living with one of over 7,000 currently identified rare diseases.

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We encourage everyone to show support for rare disease patients and the issues they face on this Rare Disease Day. One way to do that is by taking part in our #ShowYourStripes awareness campaign. Many wear stripes on Rare Disease Day as a symbol of solidarity with rare patients and families. We also invite you to participate in Rare Disease Day virtual advocacy events, where topics such as health equity and other issues of importance to the rare community will be discussed.

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