What is rare disease day?
Since 2008, Rare Disease Day (RDD) has been held annually on the last day of February. Bringing together physicians, patient organizations, researchers, medical companies, and of course, rare disease patients from around the world; RDD is a unique opportunity to raise awareness and bring support to the community.
Why raise awareness?
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases, and their impact on patients' lives. It's never too late to get involved!
Why is it important?
It is important to improve understanding and awareness of rare diseases, not only on Rare Disease Day, in the hope that we can better support patients living with these conditions.
Recourses and Credits:
https://www.centogene.com/company/social-responsib...
https://www.rarediseaseday.org/article/what-is-rar...
https://www.janssen.com/emea/stories/rare-disease-...
Updates
February 19, 2021
The engagement on this petition has reached a level that allows me to request a formal briefing with the public health committee. My focus is now on preparing the documentation required for that discussion.
7 Comments
Its vital to understand what rare diseases patients go through and support them, let us SPREAD THE WORD!
People who are unique are always at the peak, because they withstand what common can't.
You are a superman/ superwomen and don't let anyone forget it! You are beautiful as much as ever. I can only hope to live up to the amazing example you have set for all those around you. You continue to be such an inspiration, even through this, we are in this together! You never know how strong you are until being strong is the only choice you have. "God didn't promise days without pain, laughter without sorrow or sunshine without rain. But he did promise strength to the day and light for the way,
you are special and strong , god is testing your patience , and you can go through this we all support you.
The disease you are bearing may be rare, but your hope shouldn’t be. Wishing you all the happiness on this Rare Disease Day.
You have to know that you are not alone in this fight, we are all in this together. TOGETHER WE ARE STRONG
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What is rare disease day?
Since 2008, Rare Disease Day (RDD) has been held annually on the last day of February. Bringing together physicians, patient organizations, researchers, medical companies, and of course, rare disease patients from around the world; RDD is a unique opportunity to raise awareness and bring support to the community.
Why raise awareness?
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases, and their impact on patients' lives. It's never too late to get involved!
Why is it important?
It is important to improve understanding and awareness of rare diseases, not only on Rare Disease Day, in the hope that we can better support patients living with these conditions.
Recourses and Credits:
https://www.centogene.com/company/social-responsib...
https://www.rarediseaseday.org/article/what-is-rar...
https://www.janssen.com/emea/stories/rare-disease-...
Updates
February 19, 2021
The engagement on this petition has reached a level that allows me to request a formal briefing with the public health committee. My focus is now on preparing the documentation required for that discussion.
7 Comments
You are never alone .... speak up and let us know how we can make life better for you ... keep on fighting ....
Its vital to understand what rare diseases patients go through and support them, let us SPREAD THE WORD!
People who are unique are always at the peak, because they withstand what common can't.
You are a superman/ superwomen and don't let anyone forget it! You are beautiful as much as ever. I can only hope to live up to the amazing example you have set for all those around you. You continue to be such an inspiration, even through this, we are in this together! You never know how strong you are until being strong is the only choice you have. "God didn't promise days without pain, laughter without sorrow or sunshine without rain. But he did promise strength to the day and light for the way,
you are special and strong , god is testing your patience , and you can go through this we all support you.
The disease you are bearing may be rare, but your hope shouldn’t be. Wishing you all the happiness on this Rare Disease Day.
You have to know that you are not alone in this fight, we are all in this together. TOGETHER WE ARE STRONG
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You are never alone .... speak up and let us know how we can make life better for you ... keep on fighting ....