MPNRF Blog

Mental Health and Myeloproliferative Neoplasms

October 10th is Mental Health Awareness Day. What does that have to do with myeloproliferative neoplasms? More than you think. In multiple surveys, people living with an MPN (Polycythemia Vera, Essential Thrombocythemia or Myelofibrosis) have reported a higher rate of anxiety or depression than the general population. A recent study from Denmark coroborated this. Looking at 2,209 people with an MPN who completed the Hospital Anxiety and Depression Scale, the prevalence of anxiety, depression, and both was 21%, 12%, and 8%, respectively. But this has been noted before including by the Landmark Study and in a survey jointly conducted by the research and advocate communities.  [...]

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Bringing the voice of MPN to the FDA

On Monday, September 16th, twelve courageous people living with Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis took the stage in Bethesda, MD at the Externally-Led Patient-Focused Drug Development Meeting on Myeloproliferative Neoplasms. They discussed how health events and living with chronic cancer continues to disrupt their lives, their symptom burden, and what strategies they use for managing them as well as their experiences with various medications and clinical trials. But most importantly, each patient spoke about their hopes for the future as it pertains to drug development. YOU have a chance to weigh in as well. For the next 30 days, we will be collecting YOUR feedback on what issues you are living with, what benefits you would like to experience with further drug development. Just send an email with your name and diagnosis to communications@mpnrf.org (we will not share your name or email).  [...]

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"Cancer is a thief"

Some may wonder what drives someone to become a Cancer researcher. In this video titled "Cancer is a thief" Dr. Ruben Mesa speaks movingly of his personal and professional motivations as a Cancer Center Director, renowned MPN researcher and human being who has experienced personal loss. Thank you Dr. Mesa for sharing your personal story, and for your work on behalf of those living with the rare blood cancers myeloproliferative neoplasms.  [...]

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Let the FDA know about your experience living with PV, ET or MF!

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: [...]

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Rare Disease Advocacy Summer

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.  [...]

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MPNRF's Executive Director Discusses the Interferon Initiative

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). [...]

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Goodbye 2018, Hello 2019!

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Patient advocacy groups and pharma money

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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