Make sure your voice is heard this Rare Disease Day

Feb 28, 2018
Make sure your voice is heard this Rare Disease Day

If we all do just one thing to mark Rare Disease Day, we will be one step closer to making this catch-all term for nearly 7,000 different diseases known to all.

That’s the view of Lisa Phelps, Director of Strategic Planning and Project Development at the National Organization for Rare Disorders (NORD®).

“It’s so important to raise our collective voices and utilize every resource available to us to make as much noise as possible. Together, we can have a real impact.” she told Change Together.

“Rare Disease Day provides the largest platform for individuals and patient communities to tell their story and raise awareness in front of a captive audience. By getting involved and taking some form of action you’re also helping to raise awareness for those who may not have a voice to lend to the campaign due to their illness or that of a loved one.”

People can take part in #HandPrintsAcrossAmerica by posting a photo of themselves with the Handprints flier on social media. They can also participate in advocacy events around the country and in the annual tweet chat hosted by NORD®. All of this information is available to the community on the U.S. Rare Disease Day website (www.rarediseaseday.us).

Thirty-five years of NORD® and the Orphan Drug Act

This year’s event is particularly special, as 2018 is the 35th anniversary of both NORD® and the Orphan Drug Act.

“These milestones provide an opportunity for the community to reflect on how far we have come and renew our commitment by doubling down on our efforts. We are focusing our attention this year on activities that will bring rare diseases to the attention of those outside of the community and will highlight the importance of research for new treatments and cures, and advocacy to protect patient access to critical care,” said Lisa.

“This campaign is really important because ‘rare disease’ is not a commonly used term, people don’t recognize what it means. Because there are 7,000 conditions, it’s really hard for every one of them to get the attention they deserve in terms of awareness and research.”

 Widening the conversation

“This year, we want to get more people involved than ever before. We want to make sure the community is engaging and talking to people who may not already be in the conversation,” said Lisa.

“Broader awareness efforts are stifled when the only people listening are those who are already committed to the cause,” she added.

“One in 10 Americans has a rare disease.1 That’s a lot of people who have or know someone with a condition that they might not realize is rare, or that they are part of a community that can help them. We want to bring them in, give them access to resources, educate them on what is available, and connect them to patient organizations that can support them.”

Educating medical professionals on the diagnostic and treatment challenges affecting the 30 million people who live with a rare disease in the U.S. is also crucial.

NORD® is contacting hospitals to offer educational material and sessions to doctors, nurses and pharmacists. The group also employs a medical student coordinator who works with universities and campuses to educate the next generation of doctors.

“Historically, medical professionals haven’t received much education or training on diagnosing and treating rare diseases, though that is changing. We are reaching out to hospitals and offering our support with awareness events and educational programs,” said Lisa.

For more information, click here.


Reference

  1. National Organization for Rare Disorders (2017). Rare Disease Fact Sheet. Available at: http://cdn.rarediseases.org/wordpresscontent/wp-content/uploads/2014/11/NRD-1008-FactSheet_5.pdf. (Accessed February 2018).
Make sure your voice is heard this Rare Disease Day

Author

Lisa M. Phelps, M.P.H. is Director, Strategic Planning & Project Development for NORD.  Lisa joined NORD in 2011 and serves as the Director of Strategic Planning and Project Development. In this role she is responsible for strengthening the development of strategic and operational plans that support the organization in pursuing innovative and promising ideas. She works closely with NORD’s board of directors, executive management team, staff and external partners, both nationally and internationally, to align short and long-term strategies for program development and growth.

Prior to her current role, Lisa led the advancement of tactics for marketing, community relations, and membership services. Among her achievements in marketing was the evolution of NORD’s branding and the expansion of its primary website that now reaches more than 8.3 million people worldwide each year.

As part of her commitment to supporting the global advancement of rare diseases, Lisa serves on the executive committee of the governing council for Rare Diseases International (RDI), a global network of rare disease patient organizations dedicated to making rare diseases a universal public health priority.

Lisa received her M.P.H. from the Milken Institute School of Public Health at George Washington University and her B.A. in political science and law & policy from Bernard Baruch College, a public research university. Her training is a combination of public health, health policy and law. In 2009, she was awarded for outstanding academic performance in the liberal arts and sciences.

 

 

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