May of 2020 has brought unprecedented challenges and changes, the world over. We hope you find comfort in knowing that the GBS|CIDP Foundation International has made every effort to continue to Support,Educate, fund Research and Advocate for our patients in new and innovative ways. We are here for you today, tomorrow and always.
This May, please join us in raising awareness of all patients struggling with GBS|CIDP, and the many efforts being made to support our community in these times of uncertainty, and in their time of need. #GBSCIDPawareness
On May 22, Congressman Blumenauer, of Oregon, recognized the Month of May as GBS|CIDP AWARENESS Month and introduced the Medicare IVIG Access Enhancement Act to the House of Representatives. Read full script here
Additionally, Congressman Holding of North Carolina also introduced the Medicare IVIG Access Enhancement Act on May 23rd. Read full script here.
Did you know that Medicare part B can restrict your location of care for your IVig treatments? Or that each year, your voice can influence Congress on important issues such as funding the National Institutes of Health’s research into GBS and CIDP?
Whether you are a patient, caregiver, friend, or family member, this May, GBS|CIDP Awareness Month, we are encouraging you to learn more about the Foundation’s legislative initiatives – which include a bill to create a Medicare Part B Home Infusion Demonstration Project, an ask for GBS to be included on the Department of Defense PRMRP list, and increased funding for NIH and CDC – use your voice, and be your own best advocate!
AWARENESS GOAL = REACH MEMBERS OF CONGRESS IN EVERY STATE!
How do I get involved?
On May 1, 2019, day one of GBS|CIDP Awareness Month, we will be launching our “Advocacy Resource and Toolkit” including:
Educational Resources, to keep you informed and “in the know”, including answers to questions like: What is advocacy? How does a bill become a law? What is the difference between State and Federal advocacy? As well as, an outline of current legislative issues that may have a significant impact on your treatment and care.
Advocacy Toolkit, for connecting with state and local representatives, including downloadable handouts with “Facts & Stats” about the GBS|CIDP and variant population in your state, a “letter” template to send to local representatives, designed to inform them of the issues & let them know that you are a rare disease patient or caregiver in their region! Remember they represent you!
Social Media – Social media is one of the most effective ways to raise awareness! Join us on social media all month long as we will provide updates to our number of “advocate volunteers” as well as the states they represent! Share, comment and join the conversation! #gbscidpADVOCATE
Updates from the Hill – Staff and volunteers from the GBS|CIDP Foundation International will be fighting the good fight and bringing GBS|CIDP awareness to Capitol Hill on May 23 – Stay tuned for live updates!
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