On the last day of February, Rare Disease Day is observed globally to raise awareness for rare diseases and create a platform for those within the community. For people living with myeloproliferative neoplasms (MPNs)—a group of rare, chronic blood cancers that include polycythemia vera (PV), myelofibrosis (MF), and essential thrombocythemia (ET)—this is an opportunity to find support and advocate for their care.

MPNs are progressive diseases that can develop very slowly, so people may have an MPN long before they start noticing symptoms. Because they are progressive, MPNs can get worse and can even turn into more serious diseases. That’s why it’s important to keep a close eye on new or worsening symptoms and to communicate them to your Healthcare Professional.

This Rare Disease Day, Voices of MPN is illuminating how people living with MPNs can track their symptoms in order to keep their Healthcare Professional up to date with how they’re feeling. Some people like to use a notebook they keep on their bedside table, or a list on their refrigerator door, and others prefer to use a ready-made list or symptom tracker app. We invite you to find what works for you and your lifestyle in order to accurately keep track of your symptoms.

SPEAK UP ABOUT MPN SYMPTOMS

On Rare Disease Day—and every day—we encourage everyone to talk openly and honestly with their healthcare team about the physical and emotional costs that MPN symptoms have on their lives. When you know how to identify the symptoms of PV, ET, and MF and talk with a Healthcare Professional about how they are affecting your life, you provide critical information that can help with your care.

TAKE ACTION IN MANAGING YOUR MPN STARTING THIS RARE DISEASE DAY

Get Started on Tracking Your MPN Symptoms

Download the Voices of MPN Mobile Tracker App so you can keep track of your symptoms wherever you are. By following your symptoms and how they might change over time, you can have more effective conversations with your healthcare team at upcoming appointments.

DOWNLOAD THE VOICES OF MPN MOBILE TRACKER APP

Join Upcoming Voices of MPN Facebook Live Events

Hear directly from MPN experts during Facebook Live events throughout the year. Don’t miss the opportunity to hear about topics related to MPNs, get your questions answered live, and build connections with others living with an MPN.

Visit the Voices of MPN Facebook event page for more information.