World rare diseases list
The event went better than we had expected it to, considering it was the first of its kind in Pakistan. We got a very good response and local Pakistani celebrities also picked up on the event trend and wore their jeans for the day.
I think that whether we managed to make one person or thousands think about these diseases, we got somewhere by at least taking an initiative and getting more people aware on this day then last year.
I learned that people were ready to hear about World Rare Disease day, and almost everyone knew someone with a rare/genetic disease, the only thing missing was someone highlighting the need for a solution to this problem. I feel that everyone knows someone, has basic knowledge but are not really aware of what they can do to help, or that help is not available as readily for these diseases. People are willing to get involved as long as they are shown a direction, which is what we will work towards from this point on.
Our event was a virtual event where we asked people to take pictures of themselves in jeans, or wear jeans on the 28th and upload pictures on their walls and also our event page and in the comment section add #WearThatYouCare. By the end of the 28th this had really started trending on Facebook as hundreds took part in this activity from Pakistan which to me is a huge success.
This is a link to our Facebook group where we promoted the event and posted pictures: .
Our event was an activity that aimed to raise awareness and there was no fundraising involved.
A radio station interviewed me on what World Rare Disease Day was about. This is the link to the show: .
I wrote a blog and an article for two leading newspapers of Pakistan to talk about the disease my mother had, Huntington’s disease, World Rare Disease Day, Global Genes, why awareness is needed and about our virtual event. You can read these stories here and
You might also like
September benefit targets rare disorder in infants.(Health and Fitness)(Congenital adrenal hyperplasia can be managed, but early detection is the key ... article from: The Register-Guard (Eugene, OR)
Book (The Register Guard)