Being diagnosed with an MPN is often a very confusing and emotional experience for patients. It's important to take action in understanding what support is available and learn more about living with the disease.
Here's some simple steps to follow for those who have been recently diagnosed, or those already living with MPN but wanting to take the initiative:
Learn how the Ruby Red Foundation can help you.
Explore our website and checkout our other partners and friends across the MPN community. If you have any questions, we're always here to help.
Find a specialist.
Do some research about practicing haematologists with a specialisation or interest in MPN and select one that meets your needs.
Self-educate and become informed about your disease.
Empower yourself to take action in understanding your disease better. It's important MPN patients advocate and take control of their MPN journey but you're not alone, ask others for help including your doctor, specialists and other patients. Attend patient support group events, and sign-up for membership of the Foundation to be part of the MPN movement.
Read other patient stories and share your story.
Stories are an essential part of how we communicate, interpret experiences and incorporate new information into our lives. Listen to stories of other patients living with MPN here and volunteer to share your story with others - every story matters.
Find support groups in your area.
The Ruby Red Foundation and many of our partners and friends conduct free support group events for patients across Australia. To find out more, check the Events page.
Learn how to participate in research.
We are very fortunate here in Australia to have a growing community of like-minded and passionate MPN researchers. The Foundation continues to support and fund life changing MPN research, but researchers need your help. Find out how to become involved and participate in research.
Get involved and contribute to the Foundation.
There are many ways people can contribute to the Foundation and make an impact, from one-off donations to volunteering and fundraising - visit the Contribute section of our website for ways you can help. Advocate for the MPN community, join the Foundation as a member and lets together make research happen.