“Alone we are rare. Together we are strong.” –National Organization for Rare Disorders
In this episode we are joined by Paul Melmeyer, Associate Director of Policy at the National Organization for Rare Disorders (NORD). Among other things, Paul is the main lobbyist of NORD and visits Capitol Hill often, frequently meeting with the FDA, Medicaid, Medicare, and other federal services that impact those affected with rare diseases.
NORD’s goal is to be a one-stop shop, offering aid to those facing the challenges of a rare disease. One of the benefits of NORD in particular, and in the entire rare disease community, is the strength of collaboration. That with the same goal in mind – helping with the challenge of rare disease – the collaboration of the entire rare disease community is probably its greatest strength. As more and more people become more and more involved in advocacy within the rare disease community, it’s exciting to picture the progress that can be made 5, 10, 15 years in the future.
Paul tells us about the motivation and dedication of the “intrepid mom’s” who founded NORD over 34 years ago. He says that the main reason NORD has been effective for so long is because it tries to be “the voice of those with disabilities.” He credits much of NORD’s success to relationship-building with other entities in the rare disease community.
As the U.S. sponsor of Rare Disease Day which began in Europe in 2008, NORD has played a vital role in raising awareness and continued support, in many different facets, for the entire rare disease community.
For more information on NORD, please visit: www.rarediseases.org
For information on Rare Disease Day, please visit: www.rarediseaseday.org