Grant to fund PBS television series to focus on technology innovation and its impact on diagnosing disease in children.
Dana Point, Calif. – November 23, 2009- The Life Technologies Foundation has awarded The Children’s Rare Disease Network a $50,000 grant the nonprofit organization announced today.
The funding will be used to increase the Network’s public education resources and help spread the word to parents of children with rare diseases and the general public about how DNA mapping is propelling forward advances in medicine to find cures for rare pediatric disease.
As part of this public education campaign, PBS’ To the Contrary with Bonnie Erbé will air a series of three documentary-style field pieces on this technologically ground-breaking work and show how families are benefiting from genetic mapping research that uses DNA as a diagnostic tool.” “We view this grant as a huge win for the rare disease community as a whole”, stated Nicole Boice, Children’s Rare Disease Network Founder and President. “We are grateful to Life Technologies Foundation for their support and help in building greater awareness about rare disease and the impact on our families.”
All of this work is critically important for families of children affected by rare disease, because the technology is becoming a tool that provides new hope and prognosis when time is critical. With 25 – 30 million people afflicted with a rare disease in the United States and approximately 100 million people directly impacted, rare disease is becoming recognized as one of the most debilitating and deadly disease categories facing our families today. Understanding the impact on our community, and more specifically our children, The Children’s Rare Disease Network in collaboration with hundreds of disease specific and rare disease umbrella organizations are working to educate the greater public about the prevalence of rare disease.
Additionally, recognizing the need for greater understanding, education, and awareness about rare disease has become a catalyst for the Children’s Rare Disease Network and its mission.
“Most people are unaware of the millions of people whose lives have been upended by these rare diseases,” says Nicole Boice, “We need to change this by developing greater public awareness, by creating programs to increase community involvement and build corporate commitment and support. These types of efforts will become a catalyst for more resources and more funding directed to help these families. The grant from the Life Technologies Foundation and the PBS series developed by Bonnie Erbe is an important first step for our organization.”
Americans are currently living during a transformative time in medicine. With the advent of personalized therapies and the development of innovative technologies, Americans have more opportunities to help diagnose rare diseases and develop effective treatments within their children’s lifetime. There is a lot of work that needs to be done, but with the efforts of patient advocacy organizations, biotech and pharmaceutical companies, the industry is moving in the right direction.
The Children’s Rare Disease Network
The Children’s Rare Disease Network is a division of The R.A.R.E. Project, which exists to promote Rare disease Advocacy, Research, and Education. It is a 501(c)(3) corporation. The organization is committed to improving, extending and saving the lives of millions of people living with a rare disease or disorder. Through its comprehensive web community and collaborative efforts, The Children’s Rare Disease Network will empower patients, their families, patient advocates, and caregivers to make a difference in the lives of these children, their therapy and treatments. www.rareproject.org