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.