RAISING MPN AWARENESS ONE CONNECTION AT A TIME

RAISING MPN AWARENESS
ONE CONNECTION AT A TIME

 

HELP SUPPORT THE MPN COMMUNITY ON RARE DISEASE DAY

Author: Voices Of MPN

Raise awareness of myeloproliferative neoplasms on February 28, 2019

If you or someone you care about is affected by a myeloproliferative neoplasm (MPN) such as polycythemia vera (PV), myelofibrosis (MF), or essential thrombocythemia (ET), you may already know that some people have never heard about these rare, chronic blood cancers. On February 28, 2019—the 12th anniversary of Rare Disease Day—you can join rare disease communities across the country in promoting increased understanding and awareness of MPNs.

Joining the effort to help raise awareness of MPNs helps ensure that more MPN patients and their families feel supported and have access to the most up-to-date education, tools, and resources to help manage their conditions. And that can help empower them to have more informed, meaningful discussions with their healthcare team.

Get involved in Rare Disease Day

The activities below show how you can participate in Rare Disease Day efforts as an individual, with others, or on behalf of someone in the MPN community.

Join a Facebook Live panel discussion

If you have questions about MPNs—or you want to understand how monitoring your condition over time can encourage more informed discussions with your Healthcare Professional—be sure to join a special Rare Disease Day Facebook Live Discussion on February 28 at 7:00 PM ET. A panel of Oncology Clinical Nurse Educators (OCNEs) from Incyte Corporation will answer questions about MPNs and discuss how tracking these conditions can help patients and Healthcare Professionals have more informed conversations with each other.

Nominate your MPN Hero

Rare Disease Day is your first opportunity in 2019 to nominate someone for the MPN Heroes® Recognition Program. This initiative honors organizations and individuals who have dedicated themselves to improving the lives of people with MPNs.

Take an active role in managing your MPN

This year’s Rare Disease Day efforts are focused on facilitating improved patient access to the wide range of care and support tools and resources that people with rare diseases need. Because MPNs are progressive conditions, they may worsen over time. Tracking tools for people living with MPNs can help keep an ongoing record of how their MPN may be changing and give them a greater awareness of their individual condition.

Keep track of MPN symptoms, blood counts, and procedures

Regularly monitoring your MPN is a great way to ensure that you and your Healthcare Professional are able to identify how your MPN may be changing over time. This can reveal important insights about your disease status, which can drive meaningful discussions with your Healthcare Professional. By reinforcing ongoing dialogue and partnership with your care team, you can take a more active role in how your condition is managed.

With a secure login experience that allows you to view your saved data on your computer, tablet, or phone, the MPN Tracker Tools are a great way to keep track of your condition—and ensure that you’re having informed discussions with your healthcare team. In addition, the MPN Tracker Tools have been enhanced to allow you to set individualized blood count targets as determined by your Healthcare Professional, for a more personalized tracking experience.

Support MPN awareness all year long

On Rare Disease Day—and throughout the year—be sure to raise your voice in support of MPNs by spreading awareness through social media and word of mouth. Remember, your efforts can make a real difference in promoting increased support for the MPN community.

REGISTER FOR MPN RESOURCES

Sign up for education and support materials to learn more about myeloproliferative neoplasms (MPNs).

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EXPLORE THE NCCN GUIDELINES FOR PATIENTS®: MPNS
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