Rare Disease Day - February 28

I came across this information while on the Shriner's Hospital for Children's website. I had followed a link to Rare Bone Disease Patient Network, and became very interested. My son has what's considered a rare bone disease, Legg-Calve-Perthes' Disease, so this information piqued my interest. Through all my research I had never come across this network or what they did. This year's Rare Disease Day will be the first in the US. Last year it was in Europe, but the founders are hoping for worldwide participation eventually. Everyone can help this initiative by writing their Governors and local representatives and asking for their support in officially proclaiming February 28th as Rare Disease Day. It comes down to a group called United States Bone and Joint Decade, or USBJD.

Rare Bone Disease Patient Network

Their mission statement is as follows:

"The Rare Bone Disease Patient Network is a coalition of rare bone disease organizations, established under the auspices of the U.S. Bone and Joint Decade, with the mission to share information, expertise and resources, in a collaborative effort to increase awareness, understanding, and research of rare bone disorders."

Their objectives and programs all revolve around collaboration and knowledge sharing. Instead of having small groups for each disease, they are trying to make a "community" where knowledge and research is shared. All fifty states, one hundred and twenty five medical schools, and over one hundred patient organizations have pledged their support to USBJD. In March 2002, the president declared "National Bone And Joint Decade" 2002-2011. In short the group sometimes simply called Decade works hard not only to raise awareness to Musculoskeletal diseases, both of adults and children, but also works at researching these diseases. They are concerned not just with the physical outcomes, but also the "burden of care". The USBJD is committed to improving the quality of life for those who suffer from Musculoskeletal conditions. They have many projects going on that are about awareness and care of people both young and elderly.

USBJD Projects

Call to Secondary School Principals

USBJD would like principals to talk with students about the importance of calcium. Being young, most students don't think of bone health. Most are also unaware that there are many Musculoskeletal diseases that affect the young as well as the elderly. They encourage principals to write usbjd@usbjd.org to request brochures on the Decade and prevention tips. You can also contact NATA to invite one of their members to speak at your school.

Public Awareness

Listed are many ways to spread the word. They encourage use of your own organization to spread awareness.

Project 100 - Musculoskeletal Education

At last, the AAMC's involvement means that one hundred percent of medical schools will have instruction on Musculoskeletal medicine. Believe it or not, there are many doctors who don't know anything about these diseases. I will use my son's disease as an example again. We were at the ER for a broken ankle he sustained. The ankle had nothing to do with his LCP, but seeing Legg-Calve'-Perthes Disease listed under current conditions, the doctor asked me what LCP, or Legg-Calve'-Perthes was, and will the broken ankle affect it. Yes, the ER doctor asked me. At last there will be more education on Musculoskeletal diseases.

These are just three of the many fantastic awareness programs from USBJD. To find out more, or even get involved, go to the project's website. So who else endorses this "decade"? The World Health Organization, the United Nations, and the Vatican have endorsed the Bone and Joint Decade. The reason being around the world, Musculoskeletal problems are the most common causes of long-term disability and chronic pain, causing a terrible loss of quality of life for the sufferers. Besides loss of quality of life, the estimated cost for diagnosis, treatment, and lost wages in the years 2002-2004 was an astounding $849 Billion!

http://www.usbjd.org/projects/project_op.cfm?dirID=206
http://www.aamc.org/meded/msop/
http://www.usbjd.org/projects/index.cfm
http://www.usbjd.org/research/research_op.cfm?dirID=198
http://www.usbjd.org/projects/RBDPN_op.cfm?dirID=264