You are rare

You are rare! Yes, you, living with Polymyositis, Dermatomyositis, Inclusion Body Myositis, and Juvenile Myositis. Our caregivers, you, too, are rare. And today, Rare Disease Day (RDD) 2016, is all about you! We are Rare but we Roar!

Today is a day to celebrate you and your struggles, victories, and your Voice. It is a day to take notice of what is needed for rare disease patients, and caregivers alike. We must “Make the Voice of Rare Disease Patients Heard,” the RDD slogan this year. Only through our collective voices will change happen.

With the 2016 Rare Disease Day theme of Patient Voice, remember that we provide you a voice in everything we do and with every step we take. We are committed to helping support, educate, and assist you in ways that will help you to raise your voice and take better care of yourself.

With 30 million people living with a rare disease in the U.S. alone, there are plenty of opportunities, if we come together, to create better ways for patients to be heard, to improve and develop treatments, and to provide knowledge and understanding.

Here at MSU we actively support and educate over 5,000 people about life with Myositis. With an estimated 50-75K patients living with a form of Myositis, we must do better. We need to reach out in creative ways to help patients find us so they, too, get the same high-level support and knowledge needed to help them better advocate for themselves, and to better understand their illness. We call this Knowledge in Action. Through knowledge and education comes better understanding.

If you know someone living with Myositis, please be sure to let him or her know about Myositis Support and Understanding. Order information cards that you can hand out that contain our contact information and a description of Myositis. Give them to other patients you meet at infusion centers, hospitals, and doctor offices; give them to your doctors and nurses, family members, and friends. Myositis touches the lives of everyone surrounding you, and most people are willing to learn if you take the time to teach.

So, stand up for one another, today and every day! Join hands! Learn, volunteer, and donate to rare disease organizations. Together we are stronger!

If you have a Rare Disease photo, story, or video, share it with us for publication on our website and social networking sites. Make your voice heard today!

With many thanks for your support,
Emily A. Filmore
Vice President, MSU

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Emily A. Filmore is an author, speaker, and is one of the founding board members of Myositis Support and Understanding Association. She wrote "The Marvelous Transformation: Living Well with Autoimmune Disease" about her experiences with dermatomyositis and other chronic illness (Central Recovery Press 2015), the "With My Child" series of children's books about family bonding (Withmychildseries.com), is the co-author of "Conversations with God for Parents" with Neale Donald Walsch and Laurie Lankins Farley. (Rainbow Ridge, 2015), and co-author of “Parenting through Divinity” with Laurie Lankins Farley (due for release in 2018 through the Waterside imprint).

View more information: Emily Filmore

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