My baby son had a rare genes that cause his death, Campomelic Syndrome is so rare that it happens something like 1 in 5 million, or 5 in 1 million. They don't even know. Even today, last month 3 babies die from it.
I received my Rare Genes sticker all the way from USA. The idea is to stick my sticker in the most interesting place. I went outside, and stuck it at the transformer by the fence, Then I read carefully, It said, please report graffiti and it will be removed. I saw the remains of someone's old notice.
I have symbolically put it on the transformer, and took the photo for blogworld and facebook to read.
Join the Hope movement. 1 in 10 people have a RARE disease. Help unite 1 Million people who support RARE genetic disease awareness. 7,000 different RARE diseases exist -95% have no treatments. Support 30 million Americans and 350 million globally!
Mission
Global Genes Project’s primary mission is to increase rare disease and genetic awareness worldwide and empower a vibrant rare disease community. The organization works to increase public and physician education, builds community throughhttp://www.blogger.com/img/blank.gif social media and is working to fund innovative ways to increase rare disease research.
Company Overview
The Global Genes Project is a worldwide rare disease and genetic awareness movement designed around a denim jeans theme and a Genes Ribbon™, which like the pink ribbon for Breast Cancer, has become the unifying symbol of hope for millions touched by rare diseases.
http://www.globalgenesproject.org
Location 24701 La Plaza #201, Dana Point, CA 92629
Email nicoleb@rareproject.org
http://weekendreflection.blogspot.com
6 comments:
This is a heavy thought to reflect on, Ann. How sad.
Rare diseases get left out when it comes to funding research, they need more publicity.
Mirror mirror on the wall...
Interesting post. Now you can find free list of diseases.
Yes, we all show our support. It seems to laboratories only interested in money. States are those who will fund research and find solutions.
Rare diseases certainly don't get the publicity and money for research. It's sad how much money this world spends on the military and how little on basic research.
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