Flute Of Light - Israel Aware reness ss week Activities ties
About Myself • I am 45YO, Married + 3. • Diagnosed with High Risk Myelofibrosis in transition to Acute Myeloid Leukemia (AML) on March 2015. • My life expectancy was 6 months. • Had Allogenic Stem Cell Transplant (SCT) on June 2015. • Currently on daily drugs only. • A Member of the Flute of Light Org. Committee, engaging MPN patients. • Sport and the sea became my way of life and second nature. • I support and encourage other patients to do so as well. It with no doubt helped me get better faster.
About Awareness week o September is the international awareness month for blood cancer. o This year we decided to raise awareness to MPN directly to our “target audience”, and reach out to hematology patients. o We thought the best place to reach them would be at the daycare clinic centers at 6 different big hospitals in the country.
o We mapped the different hospitals in Israel, in order to reach the maximum patients in Israel (North, South, East). o We had booths at 6 different hospitals for a whole week, September 11-15.
We teamed up to a public relations manager and published articles, patient stories and publications on our activities on local and national media.
We explained to MPN patients about our organization and the services we give to patients. (Information, peer to peer support, fighting for patients rights and access to new treatments).
We handed out patients info booklets and giveaways with the Flute of Light Logo.
We organized 3 patients meetings at 3 different hospitals on that week.
What we did ? o We contracted a lobbing company to involve policy makers and parliament members in our activities .
What have we Achieved ? o 500 500 new registered patients to the organization. o 70 70 patients joined the Facebook groups. o 66 66 page likes on Facebook page. o 1,000 000 new entries to our website. o more re than 15 15 articles, patients stories, and radio interviews were published o 2 Key Opinion Leaders parliament members joined our activities o We handed out more e than 1,000 000 patients info booklets
Th Than ank k Yo You u
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