When something is considered “rare,” it doesn’t occur very often. One rare disease may only affect a small number of people. But when you consider there are over 6,000 existing rare diseases, and half of them affect children, it’s hard not to realize the massive impact these rare diseases have on the world.
These diseases are so rare that not enough research is being done. It’s because of that lack of research that many people face delays in diagnoses, and therefore a less-than-optimal prognosis. And it’s because of all of this that there are often no existing effective cures, which means rare diseases can result in more pain and suffering for patients and families than other, more common conditions.
On the list of 6,000 rare diseases you will find mesothelioma and asbestosis – two illnesses caused by exposure to asbestos. According to the American Cancer Society (ACS), mesothelioma is a fairly rare form of lung cancer in the United States, with about 3,000 new cases being diagnosed each year. Mesothelioma occurs much more frequently among older people than younger people, with the average age at the time of diagnosis for pleural mesothelioma (mesothelioma in the chest) being 69-years-old.
Another rare disease caused by asbestos exposure – asbestosis – is a chronic lung condition. While progress is being made in regards to research for both asbestosis and mesothelioma, there is still much work to be done. Both diseases do not have cures.
The Theme for Rare Disease Day 2018 Is Research
Rare Disease Day 2018 will be celebrated on February 28, and this year’s theme is “Patient Involvement: Research.”
The purpose of Rare Disease Day is to bring organizations and individuals across the world together to hold events, create media coverage and ignite global awareness for the general public and policymakers on rare diseases and the massive impact they have on millions of people.
In order for progress toward a cure to be made for any rare disease, including mesothelioma and asbestosis, there must be political momentum and research. So many conditions do not have the funds or support they need for adequate research to take place, but raising awareness through Rare Disease Day can help promote such efforts.
“Rare disease research contributes to the development of diagnostic tools, treatments and cures, as well as improved health and social care for patients and their families,” states the Rare Disease Day website.
Just like with mesothelioma, while progress is being made in regards to research, “the fact remains that there are over 6000 rare diseases, an estimated 30 million people living with a rare disease in Europe and 300 million worldwide, but no cures and few treatments available for the majority of these diseases.”
How You Can Get Involved in Rare Disease Day 2018
Thinking about joining the effort to raise awareness for rare diseases? There are many ways to get involved, including:
- Send a press release to the media outlets in your region.
- Talk to the media about rare diseases affecting you, your family or your community.
- Organize and host events around rare diseases, such as conferences, workshops, meetings, walks/runs, sports events, fundraisers and more.
- Hold a competition centered around rare diseases, such as an art competition, sports competition, photo contest, essay writing challenge, etc.
- Display posters, images or flyers. EURORDIS, which leads the coordination of Rare Disease Day, offers posters and flyers you can download on their website.
- Reach out to your local government leaders via email or a letter, asking them to get involved in research for rare diseases.
- Distribute stickers, flyers or badges to people in your community, like in schools, hospitals, grocery stores and more.
- Speak up! Don’t be afraid to talk about rare diseases, whether it’s in person, or through social media.
The media is the best way to reach a large number of people and shape opinions that influence our policymakers. You can get more ideas for raising rare disease awareness by seeing what was done in past years.
If you are ready to take your involvement in Rare Disease Day 2018 to the next level and help raise awareness for mesothelioma and asbestosis, fill out the form on the Rare Disease Day website today.
