Connect & Communicate to Celebrate Rare Disease Day 2022
Author: Voices of MPN
For people affected by myeloproliferative neoplasms (MPNs) and their loved ones, Rare Disease Day is a time to raise awareness about these rare, chronic blood cancers. Rare Disease Day can also remind patients that it’s important to talk with their healthcare team about their symptoms at every visit throughout the year.
Communication plays a large role in helping patients manage their journeys with MPNs such as polycythemia vera (PV), essential thrombocythemia (ET), and myelofibrosis (MF). Because MPNs can worsen over time, it’s essential for patients to speak up to their Healthcare Professionals about changes in their condition so they get the care they need.
TALK WITH YOUR CARE TEAM TO HELP MANAGE AN MPN
To provide the right medical care, Healthcare Professionals need to be aware of how frequently MPN symptoms occur and how they affect patients’ physical and emotional health. That’s why it’s a good idea for patients to partner with their healthcare team and take steps to:
- Connect with credible educational resources
- Find information and tools to learn more about MPNs
- Get tips that can help start conversations
- Communicate new or worsening MPN symptoms
- Speak up about symptoms and their impact on overall wellbeing
- Track their symptoms and discuss the results during healthcare visits
- Advocate for themselves so they get the proper care
- Ask questions about their condition and disease management
- Become inspired to help manage their MPN
CELEBRATE RARE DISEASE DAY 2022
Patients can also celebrate Rare Disease Day by getting involved in a variety of activities that raise MPN awareness:
Download the Voices of MPN Mobile Tracker app
Tracking symptoms, procedures, and blood counts is an important part of the MPN journey. The new MPN Tracker Tool makes it easy to stay on top of your PV, MF, or ET and be better prepared for conversations with your Healthcare Professional. Download the app to take the next step.
Nominate your MPN Hero
Celebrate the 10-year anniversary of the MPN Heroes® Recognition Program by honoring an individual or organization that has made a difference for you, someone you know, or for the entire MPN community.
Join the Rare Disease Day Facebook Live event
Tune into the Voices of MPN Facebook page on March 1, 2022 at 7:00 PM ET. Be a part of the conversation! Post your questions and participate in audience activities as you learn about MPNs directly from MPN Healthcare Professionals.
Explore Rare Reflections: MPNs Unmasked
Check out new content on the interactive virtual art gallery that showcases a series of powerful and personal stories of individuals impacted by MPNs. Renowned comic book artist J. G. Jones uses art to raise awareness and educate others about MPNs.
Listen to MPN Voices Out Loud podcasts
Each episode offers content designed to inspire and educate anyone looking to expand their knowledge of MPNs. Hear firsthand from patients, experts, and advocates who share their experience, knowledge, and advice. Check back often for new episodes.