Some people with MPNs have no symptoms at diagnosis and the symptoms can depend on the type of MPN the patient has. Several symptoms, such as itching, fatigue and difficulty sleeping, are shared by all three classic MPNs—Primary Myelofibrosis (MF), Essential Thrombocythemia (ET) and Polycythemia Vera (PV). [...]
You may have heard that MPNRF, along with fellow MPN advocates, is holding an externally-led Patient Focused Drug Development meeting with the FDA this September. If you are living with PV, ET or MF we are making sure your voice counts and is heard by the FDA. One of the means of doing this is collecting feedback via a quick phone survey with two questions: [...]
Summer is here and Rare Across America has a unique opportunity to connect Members of Congress with their constituents who are living with a rare disease such as Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis. Their program sets up meetings with advocates and Members of Congress or their staffers for a discussion on something YOU know well: what it is like to live with an MPN and what Congress could possibly do to help. [...]
The MPN Research Foundation has invested more in Interferon research in the past few years through our MPN Interferon Initiative, a global collaboration among researchers and patient advocacy organizations. Interferon is a drug that has been on the market for decades. It was developed to treat viral infections like hepatitis B, but the medical community has also found uses for it in the treatment of cancer, including myeloproliferative neoplasms (MPNs). [...]
April 12, 2019 [...]
You may have seen articles recently (here and here are two examples) on the issue of patient advocacy organizations or physicians taking funds from the pharmaceutical industry. We at MPNRF have been thinking a lot about this for years. In 2011 we adopted and published a policy on how MPNRF would maintain independence and neutrality in light of accepting contributions from sources that include pharmaceutical and smaller biotech companies. These funds come in the form of support for: [...]
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Check back regularly for updates about what’s happening in the MPN community, from advocacy to research..