RARE DISEASE DAY 2012
Today is February 29th – a day that comes every four years. It’s also Rare Disease Day. As you may know, Polycythemia Vera, Essential Thrombocythemia and Myelofibrosis are designated rare diseases. In recognition we wanted to draw your attention to news for the Myeloproliferative Neoplasms community.
• The National Organization for Rare Disorders has organized a campaign for people to let their elected representatives that they care about rare diseases like MPNs. Click here to participate.
• MPN Drugs – In January Jakafi was approved for treatment for symptoms related to Myelofibrosis. This makes it the first FDA approved treatment for any of the MPNs. There are other drugs for PV, ET and MF currently in clinical trials.
• Financial Assistance – We’ve discovered new resources for MPN patients including help with co-pays and financial assistance for drug costs.
• Pegasys – In February we announced that Cigna was now covering Pegasys for PV and ET. As an off-label medication Pegasys was not automatically covered by all insurance. We are now requesting other companies follow suit.
Recently there has been more of a spotlight on the MPNs than ever before. We are proving everyday to people that while the MPNs are a rare disease, we are also a tenacious patient population. Read on for some upcoming events to watch for and attend:
• Patient Symposia – We have two events coming up for patients and caregivers. These symposia represent an opportunity to hear directly from MPN specialists on trends in MPN treatment. It also allows the MPN community to get to know one another outside the clinic waiting room. Our two symposia this year are planned for May in San Mateo and Chicago in September. Look for invitations soon. • Grant Progress Reports – Soon we will receive progress reports from our current grantees and report back to you on what they’ve accomplished with the funding they’ve received from this patient community.
• MPN Update – Our Spring newsletter will include information on our grants, what we’ve done recently for patient advocacy and some patient stories. Look for it in your mailbox or inbox soon.
• MF Challenge – In the next two months we’ll be launching a micro-site for the MF Challenge that will educate the public about why we are focusing on fibrosis in this new grant program. In June we will gather experts in the area of fibrosis and MPNs to review grant proposals that seek to stop or reverse fibrosis.Read more about our historic partnership with the Leukemia & Lymphoma Society here.
We look forward to sharing even more advances in MPN research soon.