How Are You Celebrating Being Rare?

The MdDS Foundation and our partner in advocacy, the National Organization for Rare Disorders (NORD), is celebrating Rare Disease Day on February 28, 2013. Last year we worked to create advocacy on the state level, with many Governors’ Proclamations of Rare Disease Day. This year NORD suggests some new ideas on how you can celebrate being rare.

State House Events

More than 80 advocates in 28 states have expressed interest in planning a Rare Disease State House event! The goal is to raise awareness of rare disease issues among state legislators. Patient organizations and companies work together to plan and organize these events. If you would like to help plan an event in your state, please fill out this contact form and NORD will connect you with the other individuals who have already begun the initial planning. Information about the specific events will be posted on our events map.

Other Events

NORD is posting information about the other great events taking place around the country. In the past, events have included company lunch-and-learns, educational symposia, rallies, concerts and many other awareness activities. Tell us what you are doing to celebrate Rare Disease Day here.

Bring Rare Disease Day to Your School

Parents, students, and teachers have asked for ideas on how to bring Rare Disease Day into schools. We’ve created a few resources, including a curriculum for high school health and biology classes, that all are welcome to use. In addition, we’d love to hear more about other in-school activities. Read about what others are doing and view our resources and suggestions here.

Handprints Across America

For the second year, we are asking individuals to send in pictures of themselves holding up this flier or the Rare Disease Day logo. We will add them to the Handprints Across America Gallery to show the impact of Rare Disease Day across the nation. View other images that have been submitted to date and submit your own image here.

Rare Disease Research Hall of Fame

Many researchers at university campuses, hospitals, NIH, and pharmaceutical or biotechnology companies make discoveries that lead to better understanding of rare diseases and, sometimes, important new treatments for patients. For Rare Disease Day, we are asking individuals to submit the name of a researcher who has made an impact on the rare disease community to display in the Rare Disease Research Hall of Fame. Learn more and submit the name of a researcher.

Other Ways to Get Involved

Join us on Facebook and Twitter to get up-to-date information about what is happening around the United States and join the conversation!

There are plenty of other ways to get involved in Rare Disease Day! Learn more about the US based initiatives at rarediseaseday.us or what is going on globally at rarediseaseday.org.

The Foundation would like to add a couple of suggestions. Whether you suffer with MdDS or are a caregiver to a sufferer, now is the perfect time to tell your Rare Disease story. You can submit your Face of MdDS Story (use the links above) or write a letter to your local newspaper or TV station. NORD has developed a kit to help you share your experiences with others.

Last year we had Rare Disease Day proclaimed by our state governors in many states. This year we encourage you to take it a step further and contact your State Representatives. Here are Hints for Contacting Your Representatives.

Lastly, don’t forget to share your success stories with us so we can post them. To see last year’s success stories click here.

How Rare is Mal de Débarquement Syndrome?

Any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare by the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA) and the National Organization for Rare Disorders (NORD). There are currently approximately 7,000 rare diseases listed by the NIH.

The true incidence rate of MdDS is unknown but as of October 2018 our support group membership is just over 3,000. Many sufferers are undiagnosed or have been misdiagnosed. Our mission is to change that and better understand the true nature of Mal de Débarquement Syndrome.

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