Change Your Prognosis
It’s Time to Change Your Prognosis
If you or someone you love has been diagnosed with an MPN, it’s important to know that you’re not alone – there is an entire community of patients, researchers, doctors and other advocates working tirelessly to provide MPN support and to develop better treatment options for your disease.
But it’s also important to know that advances in MPN research depend on the active participation of people like you. Time and time again, we’ve seen that the most significant progress is made when individuals get involved and play a proactive role in the MPN community.
Some of the ways you can become more actively involved in changing your prognosis include:
- Find a Specialist – If you have just been diagnosed with an MPN, it’s helpful to get a second opinion from a specialist. If you haven’t already been seen by a doctor with experience treating MPNs, we can help you find a hematologist in your area.
- Donate to MPN Research – Many of today’s cutting edge MPN research projects are funded by the donations of patients and their families. When you donate to MPN research, you help change your prognosis and the prognosis for other patients facing similar circumstances. We cap institutional overhead at just 8%, far below the average for medical research grants.
- Stay Informed – It’s critical to become knowledgeable about your disease and stay informed about clinical trials and other recent developments. Sign up to receive the latest news and MPN research updates.
- Beta test the MPN patient registry - In 2016 MPN Research Foundation will launch a registry which will track symptoms, outcomes, patient experiences and more. We need patients to help us figure out what works and what doesn't before we go live. Sign up for more info or to be a beta tester!
- Volunteer – Volunteers are instrumental for MPN fundraising and for ensuring the success of MPN community events. Even a few hours a month can make a significant difference. Contact us to learn more about volunteer opportunities in the Chicago area.
- Know Your Options and Consider Joining a Clinical Trial – Clinical trials are the only way to determine which medications are effective, but they can’t be conducted without volunteers. Periodically consult your doctor to stay informed about your options and to learn if there are any new treatments that may be appropriate for you.
- Join an MPN Support Group – Most MPN patients find it helpful to talk about their concerns with other patients. Consider joining an MPN support group in your area.
- Live a Healthy Lifestyle – In addition to routine physical exams, it’s important to maintain a healthy lifestyle. Ask your doctor for diet and exercise advice to improve your overall health.