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. 

MPD Foundation distributes brochures through NORD's Medical Meetings initiative

The mission of the National Organization for Rare Disorders (NORD) is to assist individuals with rare disorders through advocacy, funding research and promoting networking among individuals and organizations interested in orphan disorders.  We at the MPD Foundation are always looking for ways to tell people the story of myeloproliferative disorders and reach more patients.  As such, in 2010 MPD Foundation became a member of NORD.  We feel being a part of this group will help us learn about the issues specific to orphan diseases and learn how other organizations operate and spread awareness. 

A benefit of membership in NORD is participation in their Medical Meetings initiative.  As part of this program NORD collects and distributes brochures of member organizations to pertinent meetings.  The MPD Foundation utilized this service by forwarding the MPD patient brochure to various meetings, including the American Society of Clinical Oncology (ASCO) meeting that recently took place in Chicago.  

It can be difficult to connect with doctors - general practitioners and hematologists - who may see patients with a MPD.  We consider this an opportunity to educate the physician community about MPDs in the hopes that they in turn pass this information on to patients who need it.