Myositis Advocacy

Advocating for Myositis Patients

You deserve a loud voice

President of MSU talking with Gov. of Delaware about MyositisMyositis patients deserve as many voices speaking for them as possible at all levels of policy makers. MSU is happy to lend our voice to that chorus. We will advocate for patient’s’ rights with insurance companies, government agencies, and lawmakers about medical care, health insurance, prescription drug issues, disability and social security issues, ADA accommodations, and other issues. Through letter writing campaigns, phone calls, and in-person meetings, we will help those in decision-making positions to understand that although we may be few in number, our lives still count, our issues still matter, and our problems still need to be addressed.
You can join us by volunteering to write letters to lawmakers while also meeting with your local government. One specific way you can help is to write your state and local government to get proclamations for Rare Disease Day and Myositis Awareness Month every year!

We will help you by providing the information, training materials, and letter templates to get you started. Our individual voices as patients of a rare disease may be small, but when we put them together we can roar!

Contact us with advocacy items

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Get your Zebra Shirts & Hoodies Today!

Campaign for Myositis Awareness Month, May 2017

Purchasing a shirt from this booster will help us, Myositis Support and Understanding, with our many patient support programs, education, financial assistance for patients and upcoming programs.

This year, 2017, Myositis Support and Understanding’s awareness month theme is “Sometimes Zebras have spots!” We want to raise awareness about how the experiences, symptoms, and complications of this rare disease are different, even among the patients with the same disease. Doctors are now trained, when you hear hoof beats, look for zebras (rarities), instead of horses (common ailments); when in the past, they only looked for the most common ailments.

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Hi, this may be interesting to you: Myositis Advocacy! The link is included below: https://understandingmyositis.org/programs/advocacy/ --- Myositis Support and Understanding is a 501(c)3 nonprofit organization.