RARE DISEASE DAY 2019 KICKOFF
oday is World Cancer Day, and we are using this day to kick off a month-long focus on patient advocacy, ending with Rare Disease Day on Wednesday, February 28th. Advocating on behalf of MPN patients is an important part of what the MPN Research Foundation does, and we are looking forward to growing this pillar of our organization with your help. What is Patient Advocacy? For the MPN Research Foundation, patient advocacy includes raising awareness for these rare cancers, having ongoing discussions with the FDA to expand end-points – potentially leading to more drugs on the market for MPN patients – and encouraging and teaching others in our community to step forward and advocate for themselves. Here is what the MPN Research Foundation will be doing during the month of February on behalf of MPN patients around the world:
- Raising funds for the advancement of MPN research.
- Recognizing patient advocates who have devoted time energy in support of MPN patients around the world.
- Traveling to Washington DC to advocate for MPN patients at the annual Rare Disease Legislative Conference.
- Planning an externally led patient focused drug development meeting with the Food and Drug Administration (FDA).
Here’s what YOU can do to advocate for MPN patients this month:
- Raise awareness by sharing your unique MPN story on social media. Don’t forget to use the hashtags below!
- The zebra is the official symbol of rare diseases in the US. Wear stripes on Rare Disease Day to show your solidarity with the rare disease community.
- Get involved & participate in a Rare Action Network Event near you.
- Raise funds for MPN research by creating a Facebook Fundraiser, making a gift to MPNRF, or by planning a corporate giving event where you work!
#BecomeAnAdvocate #ShowYourStripes #RareDiseaseDay #MPNRF