Rare disease affects over 250 million people worldwide. Approximately 75 percent of those affected are children, making this disease category one of the most deadly and debilitating for children. Like children with Progeria, they all have very unique needs, but many have little or no support due to the rarity of their condition. Before PRF was formed, this was what children with Progeria and their families experienced. Now – 11 years later – they have hope and see true progress towards treatments and cure. We celebrate this progress, but know there is still much to do to gain sufficient support for this – and other – rare diseases.
The Fourth Annual Rare Disease Day will take place on February 28, 2011, with virtual and in-person events being held at the National institutes of Health and other places around the world. This is a time when the community of affected children and families come together to garner support for their efforts. Please visit https://rarediseaseday.us/ to find out how you can help spread the word.
The Progeria Research Foundation is partnering with The Global Genes Project (GGP), a leading nonprofit rare disease advocacy organization that educates the public about the prevalence of rare diseases worldwide.
GGP has launched the “Wear That You Care™” Denim Campaign to call attention to the global drug development crisis facing millions of people with rare diseases. Join thousands of supporters all over the world by wearing your favorite pair of jeans to raise awareness for the rare disease community. Go one step further and take a picture of yourself or your group in jeans and post it to GGP’s Facebook page. No matter how creative or how many people, you’ll be making a big statement on February 28th.
“Spurring development of new treatments for thousands of rare diseases is one of the most pressing health care challenges we face in the world today,” said Nicole Boice, Founder, Global Genes Project. “It’s time to band together to make our voices heard and to push for major legislative initiatives that provide novel incentives to researchers and industry so they will invest the time and capital needed to develop new treatments.”
Thank you, Rare Disease Day organizers, Global Genes Project and YOU for raising awareness of rare diseases, and the importance of developing treatments and cures for them!