Greetings. Today I added two more short videos on Ehlers-Danlos Syndrome that I found on You Tube. I hope you enjoy them:
1) Ehlers-Danlos: Mystery and
2) EDS What Does a Disabled Person Look like?
Connie
Monday, May 9, 2011
Thursday, February 24, 2011
Feb 28th is Rare Disease Day
Did you Know that February 28th is Rare Disease Day?
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day.Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world. In 2010, 46 countries participated.
In May of 2009 NORD and EURORDIS entered into a strategic partnership to catalyze transatlantic collaboration. The goal is to support policies and practices that speed up scientific discoveries and innovative treatments, provide access to the highest standard of diagnosis and care, encourage more patient-centered health care systems, offer a higher quality of information, and help break the isolation of the people living with rare diseases.
What is a Rare Disease?
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
"What can you do, you may ask?" This year NORD invites patients and family members to help them create a video library of rare diseases. The goal of the project is to educate the public through the stories of real people. To submit your story, or to learn more about Rare Disease Day activities in the U.S. go to www.rarediseaseday.us.
To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org
"Alone we are Rare, together we are Strong!"
Connie M. Carlson
Resource: www.rarediseaseday.us
Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. Anyone can be involved in Rare Disease Day and there are many suggested activities. The day has been established as a grassroots advocacy day.Rare Disease Day was first observed in Europe in 2008. It was established by EURORDIS, the European Rare Disease Organization. In 2009, EURORDIS asked NORD to be its partner in this initiative and to sponsor Rare Disease Day in the United States. Now, the concept is rippling out around the world. In 2010, 46 countries participated.
In May of 2009 NORD and EURORDIS entered into a strategic partnership to catalyze transatlantic collaboration. The goal is to support policies and practices that speed up scientific discoveries and innovative treatments, provide access to the highest standard of diagnosis and care, encourage more patient-centered health care systems, offer a higher quality of information, and help break the isolation of the people living with rare diseases.
What is a Rare Disease?
In the U.S., a rare disease is one that affects fewer than 200,000 people. This definition comes from the Orphan Drug Act of 1983 and is slightly different from the definition used in Europe. There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, as many as one in ten Americans are suffering from a rare disease. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions makes medical research more difficult.
"What can you do, you may ask?" This year NORD invites patients and family members to help them create a video library of rare diseases. The goal of the project is to educate the public through the stories of real people. To submit your story, or to learn more about Rare Disease Day activities in the U.S. go to www.rarediseaseday.us.
To learn what’s happening around the world, go to the global Rare Disease Day website at rarediseaseday.org
"Alone we are Rare, together we are Strong!"
Connie M. Carlson
Resource: www.rarediseaseday.us
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