How Can You Get Involved in Rare Disease Day 2020
Author: Voices of MPN
Rare diseases affect millions of people across the country—yet these diseases often receive less attention and less funding for research than other more well-known diseases. Rare Disease Day is an annual day of observance, where people affected by rare diseases share their experiences, join together, and push for more attention and more support. On February 29, 2020, join other members of the rare disease community and raise awareness of myeloproliferative neoplasms (MPNs) as part of Rare Disease Day 2020.
People living with rare diseases may face difficult challenges like delays in diagnosis, difficulties accessing treatment, and other unfortunate burdens in balancing their lives and disease management.
Here’s how you can get involved to raise awareness of MPNs in support of Rare Disease Day.
- ATTEND A FACEBOOK LIVE CHAT—Join a Facebook Live event where you can ask your pressing MPN-related questions and hear back from a live MPN expert from Incyte. If you have questions that you would like answered, you can attend this live chat from the comfort of your own home to see Emily Knight, MSN, FNP-BC, OCN and Sandy Allen-Bard, MSN, NPc, ANCC, AOCNP, address issues relevant to the MPN community. This event will take place on February 27th at 7PM EST.
- NOMINATE AN MPN HERO—The nominations for the MPN Heroes® Recognition Program will open on Rare Disease Day! You can share your admiration for an individual or organization that has committed to improving the lives of people with MPNs. It’s time to draw more attention to people living with these rare, chronic blood cancers and everyone who is working to provide exceptional care and push the science of MPNs. Don’t wait to honor the MPN Hero in your life.
- RARE REFLECTIONS: MPNs UNMASKED—As part of ongoing efforts to raise awareness of MPNs, Incyte has partnered with J.G. Jones, a renowned illustrator who was diagnosed with an MPN over a decade ago, to capture the experiences of others impacted by MPNs. Rare Reflections: MPNs UNMASKED features a series of portraits by Jones, who uses graphic art to reveal the powerful and personal stories of individuals impacted by MPNs.
Beyond the Basics: Information Every Patient With an MPN Should Know
Author: Voices of MPNREAD ARTICLE