Today is Rare Disease Day
Today is Rare Disease Day.
Every year on the last day of February we join the world-wide chorus of voices speaking up to raise awareness for rare diseases. The theme for this year’s Rare Disease Day is research, and the MPN Research Foundation is thrilled to use this opportunity to talk about how patients can directly engage with ongoing research efforts looking for new treatments and a cure for Polycythemia Vera, Essential Thrombocythemia, and Myelofibrosis.
The MPN Research Foundation has created a registry for people with PV, ET, and MF. This registry – myMPN – allows patients to raise their hands and be counted, record their symptoms, demographic information and experience with different therapies, learn about clinical trials and, if interested, share their data with researchers interested in helping them. myMPNempowers patients to change their prognosis by sharing their experience of living with a MPN. The development of targeted disease therapies will be expedited when firsthand information about disease symptoms and progression are available from patients.
If you are a patient, we encourage you to start using myMPN. This unique registry relies on real world experiences of patients to inform the search for better MPN therapies. Through regular participation, patients have a single repository for their MPN symptom and quality of life data. Survey responses can be referred to and even downloaded when preparing for a doctor visit. The ultimate benefit is to equip the research and drug development community with the data they need to move better MPN treatments (and, potentially, cures) through the discovery pipeline more quickly.
Rare Disease Day is meant to make the voices of patients living with rare diseases louder and stronger, and myMPN seeks to do the same. In honor of Rare Disease Day, join myMPN and make your needs known to the world. Already over 400 patients have registered with myMPN including 83 in the month of February alone!
If you have questions or if you would like to learn more about myMPN, please reach out to myMPN@mpnrf.org.
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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..