Join MSU in celebrating Rare Disease Day 2015
Myositis Support and Understanding (MSU) has the honor of joining The National Organization for Rare Disorders (NORD), Rare Diseases Europe (EURORDIS) and many other organizations from across the globe in expanding knowledge about rare diseases through the Eighth Annual International Rare Disease Day (RDD 2015). The theme for 2015: Living with a Rare Disease.
This day, coordinated by EURORDIS, occurs on the last day of February every year, February 28, 2015, and brings organizations and individuals together from around the world with one unified purpose: to bring awareness to the public about rare diseases. Our hope is that through increased awareness, we can find innovations of care and increased funding and advocacy.
There are currently over 6,000 rare diseases, otherwise known as orphan diseases, according to EURORDIS and NORD. In Europe, a disease or disorder is defined as rare when it affects fewer than 1 in 2,000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.
People with rare diseases often fight multiple layers of obstacles.
- Internally, there is the physical manifestation of the rare disease, which is often difficult to manage, with symptoms that are life-altering and sometimes life-threatening.
- Externally, there is a lack of understanding by the public, and even families, often leading to doubt, judgment and ridicule, unfair disadvantages and a lack of adequate support.
- Medically, there is often a lack of availability of healthcare practitioners with extensive experience and knowledge about the rare disease, often leading to delayed diagnosis and treatment.
- Systemically, people with rare diseases often encounter difficulties with insurance approvals for treatments, especially if many of the accepted treatments for the rare disease are considered “experimental.” Moreover, many treatments used are not developed for the disease itself, rather relying on hand-me-downs or orphan drugs.
This year’s Rare Disease Day slogan, “Day-by-day, hand-in-hand,” truly sets up our mission at MSU which is to improve the lives of Myositis patients through self-advocacy programs, need-based financial assistance for medical-related expenses and to provide education and support for patients, caregivers, healthcare providers and the general public about Myositis. We will foster direct involvement with other Myositis organizations to help promote treatment innovation and research with our collective eyes on a cure and provide financial support to organizations that share similar visions.
We need your help
We need to make a concerted effort to educate and inform every medical professional that we encounter, and every family member that we love, about Myositis, a rare disease with four subcategories: dermatomyositis, polymyositis, inclusion body myositis and juvenile dermatomyositis/myositis.
Together, Rare Disease Day 2015 and MSU provide many ways for you to become involved to help increase understanding.
- Join the Rare Disease Day Thunderclap before Feb. 28th: https://www.thunderclap.it/projects/21853-rare-disease-day-2015-28-feb
- Change your social media profile photos to the Rare Disease Day badges available for download on the Rare Disease Day website.
- Share your story of living with a rare disease on our site and on the RDD site
- Share your photos, united hand-in-hand, on our site and on the RDD site
- Purchase Myositis wristbands, books, order Myositis information cards or make a financial contribution to help support our mission. Visit our store!
- Send an email to family and friends explaining the struggles of having a Rare Disease.
Join us today in spreading awareness of the rare disease Myositis; join us in improving all of our lives. Day-by-day, hand-in-hand we can do it, but only with your help! And, let’s make every day Rare Disease Day!
Visit our Rare Disease Day section of our site for more!
Find more information about Rare Disease Day by vising www.RareDiseaseDay.org
Join our email updates and newsletter
Subscribe to our general myositis-related email updates. If you are a member of MSU, you will automatically recieve these updates and there is no need to subscribe here. To register for your free MSU membership and access to The Myositis Community Network, visit UnderstandingMyositis.org/register