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Awareness // February 23, 2016 MAAC Staff

How to Get Involved for Rare Disease Day 2016

What is Rare Disease Day?

Launched in 2008 by EURORDIS and the Council of National Alliances, Rare Disease Day is an initiative to raise awareness among the general public and health industry about rare diseases and the impact they have on the lives of patients and loved ones afflicted by them.

Rare Disease Day takes place on the last day of February each year. The event started in Europe, but it now spans the globe with a U.S. Rare Disease Day joining the ranks in 2009 and over 80 countries participating in 2015.

The awareness campaign not only targets the general public, but seeks to raise awareness among the health professionals, public authorities, policy makers, researchers, and industry representatives who all have a unique stake in rare diseases and can make legitimate contributions toward treatment improvements. Garnering a great deal of media coverage, the political momentum associated with this event serves as a form of advocacy for the advancement of national legal policies and health plans across the world.

What is considered a rare disease?

In the US, a rare disease is one which affects less than 200,000 people at any given time. In the US there are over thirty million people who are impacted by over 6,000 rare diseases, only 80% of which have a genetic origin and the remainder are caused by infections, allergies, or environmental causes. Out of these figures, half of the rare diseases in the world impact children.

Rare diseases range in their symptoms and disorders. What’s more, they impact each patient differently. Some common symptoms associated with a rare disease might mask the actual problem leading to a misdiagnosis. In such cases, the treatment that patients actually require is delayed.

Mesothelioma is considered a rare cancer because it affects approximately 3,000 people a year. Caused by asbestos exposure, mesothelioma can often be misdiagnosed as different lung afflictions before a proper diagnosis and proper treatment is administered.

What can people do to support Rare Disease Day 2016?

You can join the millions of people around the world who are already fighting against rare diseases by becoming a friend to the organization and the patients battling these diseases. If you are interested in supporting Rare Disease Day 2016, visit the event’s website to find information on the events taking place near you and show your support in these additional ways:

1. Raise awareness

Raising awareness about rare diseases is the first step to success. If you or a loved one has been affected by a rare disease, share your story with other friends, support groups and online to help spread your message. You can upload a video or photo to share your story on the Rare Disease Day’s official website.

Awareness-raising activities are crucial to the success of this event. As such, it is incumbent upon supporters to lend a hand by organizing events in your local area. These can take the form of meetings with your local authorities or national authorities; offering an informative lecture on rare diseases; or even organizing a public march in your city.

2. Host your own event

If there are no scheduled events near you, or you simply want to take your involvement to the next level, you can register to plan a Rare Disease Day event in your area. This is a great opportunity for people looking to meet like-minded individuals also working to raise awareness and support for patients and patient advocates.

3. Advocate

The lack of appropriate health care creates problems accessing treatment for those who have rare diseases. Additionally, social and financial burdens make it nearly impossible for some patients to get the comprehensive health care they require. It is for this reason and many more, that additional advocacy is required.

If you want to advocate for the cause and for changes to laws, you can. Check out the policy issues surrounding rare diseases, like lack of funding and access to affordable care, to learn more about how you can help.

4. Discover clinical trials and find researchers

Right now there is a lack of scientific knowledge about many rare diseases which leads to delays in diagnoses. That said, the only way to rectify this problem is to increase the available knowledge about these diseases.

One of the biggest issues associated with rare diseases today is that there are insufficient participants to run clinical trials. In this way, you can make a contribution by learning more about the available trials and participating if you are able. For researchers interested in studying rare diseases, learn about the National Organization for Rare Disorders’ (NORD) Research Grant Program for funding for new studies.