Mesothelioma and other rare diseases often do not garner the same amount of funding for research or advertising as more common but equally devastating conditions such as breast and lung cancers.
This is why global and national advocacy groups annually set aside the last day in February to shed light on rare diseases in the hope of reaching more patients, families, caregivers, medical centers, patient organizations and other advocates on social media.
February 28 marks the 7th annual celebration of the Day of rare diseases, and organizers this year want to share images and videos of people with rare diseases, encourage schools to participate and increase their global reach with more partners, among other objectives.
Another advantage of celebrating Rare Disease Day is that it has "notably contributed to the advancement of plans and policies for rare diseases in a number of countries, national" website shows the founder.
what is the Rare Disease Day?
Rare Disease Day originally began as a European campaign in 08, but increased in a worldwide event celebrated in 84 countries, including the United States
in Europe, a disease is considered rare if it affects less than 1 in 00. While in the US, it must affect less than 0,000 people to be labeled rare. There are more than 6,000 rare diseases.
Mesothelioma, listed as one of those rare diseases, is diagnosed in about 3,000 Americans each year.
Each year, following a theme, and the theme this year is? ? Living with a rare disease day by day, hand-in-hand.??
logo of the Rare Disease Day is a "global partnership the search for ways to improve the lives of people affected by rare diseases.
Goals rare day of illness for 2015
Susan Gammon, deputy director of communications at Sanford-Burnham Medical Research Institute in La Jolla, said the emphasis this year on the awareness about the need for further research and clinical trials on rare diseases.
besides the valuable research that should lead to a cure for some rare diseases, organizers in the United States list their goals for 2015:
- gain more media coverage
- Provide more opportunities for patients to share their stories, videos, photos and blogs with their local media. to help the public understand what it is to live with a rare disease.
- Join global partners to develop further awareness.
- Participate in more national events and involve all 50 states in these activities.
- Encourage more schools to provide a suitable quality education on rare diseases, related careers and the challenges of living with a rare disease.
- Storytelling through ?? Handprints Across America ?? online photo gallery.
- Advocating awareness of rare diseases by encouraging participants to send letters to their elected officials to raise awareness on the needs of patients and their families.
How involved
US version of the site Rare Disease Day provides a list of events across the country.
If you are interested in what is happening outside of the United States, view the list of events on the main site group.
There are many gatherings events only online and fundraisers, marches in local government buildings. He ?? s relatively easy to find an event matches your level of involvement and participation.
Medical Research Institute Sanford-Burnham in La Jolla Day Symposium held its 6th Annual Rare Disease, Saturday and Sunday. Dr. Hudson Freeze, director of the Human Genetics Program center, will host the two-day conference
The objective of the 2015 symposium: .. Simple sugars
"Sugars simple can treat patients with rare diseases, but these supplements can also influence aging, immune function and the development of diabetes. clinical trials are ongoing, but the basic underlying science remains unclear, "the site shows Sanford -Burnham Medical Research Institute.
If your region doesn ?? t have an event listed, consider organizing a with friends and family. Again, it doesn ?? t have to be anything extravagant, just awareness and start conversations with those who ignore this day is a step in the right direction.
team Asbestos.com shows the solidarity of the Rare Disease Day by raising awareness of rare diseases, such as mesothelioma.
Importance Mesothelioma Awareness
Mesothelioma is a rare disease caused by prolonged exposure to asbestos, a mineral used deadly for nearly a century in the United States for construction, manufacturing and shipbuilding.
US forces also have asbestos widely used for its flame retardant and insulating qualities. However, the mineral ?? when disturbed or damaged ?? becomes the air and can be inhaled. The tiny asbestos fibers may lead to tumors in the membrane surrounding the heart, the lungs and the abdominal cavity.
Symptoms develop 20 to 50 years after exposure, and survival rates are dark. Because of the industries in which it was used, the cancer is common among men and those who served in the military.
However, new reports show people outside of this group develop the disease, despite limited use of the mineral in the US
For example, researchers recently discovered high levels incidence of mesothelioma among women and residents under 55 years in southern Nevada. Studies show large amounts of asbestos naturally occurring in this area, and it may be the cause behind these unusual diagnoses.
In Australia, government officials thought to asbestos insulation products had been removed from hundreds of homes in the 1980s, but new reports show traces of the deadly substance in the chambers children, kitchens and living rooms. The discovery prompted a massive buyback program and demolish.
Despite these types of incidents, asbestos is not banned in the United States, which is why the awareness of a rare disease such as mesothelioma can make policy changes or at least let them people know the dangers and how to prevent exposure.
