Celebrate Rare Disease Day 2021: Raise MPN Awareness
Author: Voices of MPN
If you or someone you care about is affected by the rare, chronic blood cancers called myeloproliferative neoplasms (MPNs), Rare Disease Day on February 28, 2021, presents a unique opportunity: Let Rare Disease Day be your reminder to make and keep appointments with your healthcare team so you can continue to track your MPN, have informed discussions with them, and help manage your condition.
MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF) are uncommon diseases, but Rare Disease Day is a reminder that you are part of a larger community, which includes support from Voices of MPN.
Three Tips to Help You Be Your Own Advocate—Especially on Rare Disease Day
If you’re living with an MPN, let Rare Disease Day be your reminder of 3 key things:
- Schedule regular visits with your healthcare team.
- If you have an appointment, keep it
- If it’s been a while since your last visit, make an appointment
- Regular in-person or telehealth appointments can help you and your team better manage your condition
- Track your MPN symptoms on a consistent basis.
- Be aware of any new or worsening symptoms
- Note any changes in your lifestyle, habits, or activities
- Monitoring your symptoms can provide insights to help you and your care team understand if your MPN is changing over time
- Connect with others in the MPN community.
- MPNs are rare, but you are not alone in your MPN journey
- There is a vibrant community of resources and support available through Voices of MPN
Let Rare Disease Day be your reminder to get involved
Here are ways to show your support for the MPN community on Rare Disease Day:
- Nominate your MPN Hero—The 2021 MPN Heroes® Recognition Program opens for nominations on Rare Disease Day, February 28, 2021. Share your appreciation for an individual or organization that has improved the lives of people with MPNs. Be among the first to enter your nominations in honor of the MPN Hero in your life.
NOMINATE YOUR MPN HERO
- Explore Rare Reflections: MPNs Unmasked—Check out the e-book showcasing exclusive artwork by renowned comic book artist J.G. Jones. Featuring a series of powerful and personal stories of individuals impacted by MPNs, J.G. Jones uses graphic art to raise awareness of and educate about MPNs.
OPEN THE E-BOOK
- Attend a Rare Disease Day Facebook Live event on March 1, 2021 at 7:00 PM ET. Tune in and join the conversation to learn more about MPNs from a panel of Incyte Oncology Clinical Nurse Educators, submit your MPN-related questions, and hear inspiring stories from the 2020 MPN Heroes as they share their perspectives on topics related to their condition.
Take this opportunity and let Rare Disease Day be your reminder to advocate for your own health by resuming or keeping your regular medical appointments and related activities with your MPN healthcare team.