WAYS TO PARTICIPATE IN RARE DISEASE DAY 2017
Rare diseases and disorders affect 30 million Americans—a somewhat surprising number of people compared to the amount of attention given to their treatment and management. But you and others in the MPN community have a unique opportunity to join together, raise your voices, and help spread awareness of myeloproliferative neoplasms (MPNs) by recognizing and participating in Rare Disease Day on February 28, 2017.
Launched in the U.S. in 2009, Rare Disease Day is an international advocacy day created to bring widespread recognition to rare diseases and their impact on patient's lives. On this day, patients and their families from around the world share their stories to promote awareness of the challenges, hopes, and needs of those living with rare diseases.
One by one, as we raise our voices, we can make an impact.
This Rare Disease Day, get involved. Here are some ways you can participate and spread awareness about MPNs:
- NOMINATE someone who has made a difference in MPN care as one of our 2017 MPN Heroes. Recognize a person or organization dedicated to improving the lives of people with MPNs by submitting a nomination. Nominations open on February 28.
- ASK AN MPN EXPERT during a Facebook live chat hosted by Incyte Corporation and learn more about MPNs. Be a part of the conversation!
- WATCH AND SHARE this video as General Hospital actor Finola Hughes, whose character was diagnosed with PV, discusses this rare, chronic blood cancer.
- VISIT the National Organization for Rare Disorders (NORD) Rare Disease Day US website for additional activities. The site offers many suggestions for how to get involved.
On this Rare Disease Day, raise your voice to show you care and to spread awareness. Raise your voice to acknowledge those who make a difference in this community and help advance the care for the 30 million Americans who are affected.