What is Rare Disease Day 2018?
Rare Disease Day 2018 takes place on February 28. Since its start in Europe in 2008, Rare Disease Day has been an annual event that has grown to involve people all over the world. This is a day to celebrate all of us who live with a rare disease, and to increase awareness of the needs of the rare disease community.
Rare Disease Day 2018 and Inclusion Body Myositis
Inclusion body myositis (IBM) is one of the approximately 7,000 rare diseases that are represented by Rare Disease Day. If you have inclusion body myositis, you are part of the global rare disease community. You may wonder what that means, exactly, since it may seem that IBM does not share many features with most of the other rare diseases. How is IBM similar to choroideremia, which causes vision loss, or Wilson’s disease, which affects copper metabolism and causes liver and brain damage? What can IBM patients learn from people who have peptic ulcers due to Zollinger-Ellison syndrome, or who have leg swelling due to yellow nail syndrome? People with all of these conditions do have much in common.
What experiences are shared by people with different rare diseases?
- A long wait for an accurate diagnosis
- Frequent misdiagnosis
- Lack of effective treatment
- Family and friends and coworkers who have never heard of your condition and who do not understand
- Doctors, nurses, and other health care workers who know less about your condition that you do
- Lack of a medical support system, because the health system is not designed with your needs in mind
- The need to travel long distances to see a specialist who is knowledgeable about your condition
Although each rare disease is rare, there are so many rare diseases that, taken together as a group, rare diseases are fairly common. About 350 million people in the world have a rare disease. Rare Disease Day is a chance for our voices to be heard — a chance to tell politicians, doctors, and the public about the importance of rare diseases.
What is the Theme of Rare Disease Day 2018?
The theme of Rare Disease Day 2018 is research. Because each rare disease is so uncommon, people sometimes think that rare disease research is a relative waste of time and money, which could be better spent researching more common diseases. We need to educate the world that rare disease research is valuable, that it improves lives, that it has the potential to change the world. Rare disease research is important because we’re important. As a bonus, it often yields unexpected insights into more common diseases.
What can you do for Rare Disease Day 2018?
- Write your political representative.
- Write a letter to the editor of your local newspaper.
- Share information about your disease with friends, or post a message on Facebook.
- Attend a rare disease event.
Rare Disease Day 2018 events are taking place across the globe. From the “Getting Humerous for Research Brunch” in Kin Kin, Australia, to an educational event at the Rotunda of the Legislature Building in Winnepeg, Manitoba, Canada, from a face painting event in Corrientes, Argentina, to a Rare Disease Day radio program in Kuala Lumpur, Malaysia, people are getting involved.