Vote to Help NORD's Rare Disease Registry

NORD is the National Organization for Rare Disorders.  They bring individuals and organizations together who have one important thing in common: having or working in rare disorders.  We've mentioned our participation in their medical meetings before.  Today we discovered a new opportunity to help them create a better registry of rare diseases that is accessible to patients.  

Pepsi's Challenge Refresh Program has selected NORD to be in the running to receive $50,000 to improve and expand their registry of diseases. NORD would like to make their existing registry more user friendly, including adopting language that is more comprehensible to patients and the lay public.  

We are pleased to say that helping NORD (and, by extension, people living with a rare disorder such as MPD / MPN) is free and easy.  Just register here* and vote for NORD's project.  The 10 organizations who receive the most votes will each win $50,000. For the 1 in 10 people in the United States who have a rare disease (and more internationally), having access to information on their disease is vital in managing their treatment and symptoms.  

We at MPD Foundation believe it is important to partner with organizations who are working in the area of rare diseases.  There is potential for our struggles and strengths to overlap and help each of us understand our respective struggle.  Our relationship with NORD is just one of many we have established in the orphan and rare disease community. 

*This event has passed.

Author: Woehrle, Michelle

Michelle Woehrle joined the MPN Research Foundation in 2007 after being inspired by their mission to fund research that will improve the lives of people living with the rare blood cancers PV, ET and MF. In 2015 she was promoted to Executive Director. She has assisted with the expansion of the grants program, grassroots initiatives to connect with more patients internationally and optimize operations for the Foundation.

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