PATIENT ADVOCACY
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Local nonprofits launch month-long campaign in support of patients
The R.A.R.E Project and Global Genes Project advocate for the 30 million Americans with uncommon maladies
By Elaine MurphyPublished: February 01, 2012 06:45 AM
The R.A.R.E. Project and the Global Genes Project, both rare disease advocacy organizations based in Dana Point, will launch a month-long campaign in February to raise awareness for patients suffering from uncommon diseases, culminating in World Rare Disease Day on Feb. 29. More than 40 bloggers are participating in the organizations’ Blog Hop to inform readers about unusual maladies and their effects on patients and families.
More than 7,000 rare diseases, including spina bifida, Huntington’s disease and fibromuscular dysplasia, affect some 30 million Americans, 75 percent of whom are children. Treatment is not available for 95 percent of these diseases, and none has a cure.
"Rare disease patient organizations are beginning to realize that they are facing the exact same issues when it comes to developing treatments and cures for their specific rare disease," said Nicole Boice R.A.R.E. Project president. "By combining our voices and teaming up, we can begin to be heard on a national level and together create the changes needed to spur drug development for all rare diseases."
The R.A.R.E. Project and the Global Genes Project are seeking public support for their 1 Million for Rare campaign on their Facebook and Twitter pages.
Related headlines
St. Jude Medical Center in Fullerton to add new patient tower
UC Irvine to create a medical industry research center
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Readers Feedback:
Thank you for running this piece and helping spread awareness of rare disease including my own - fibromuscular dysplasia.
Comment at 2/7/2012
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More than 7,000 rare diseases, including spina bifida, Huntington’s disease and fibromuscular dysplasia, affect some 30 million Americans, 75 percent of whom are children. Treatment is not available for 95 percent of these diseases, and none has a cure. "Rare disease patient organizations are beginning to realize that they are facing the exact same issues when it comes to developing treatments and cures for their specific rare disease," said Nicole Boice R.A.R.E. Project president. "By combining our voices and teaming up, we can begin to be heard on a national level and together create the changes needed to spur drug development for all rare diseases." The R.A.R.E. Project and the Global Genes Project are seeking public support for their 1 Million for Rare campaign on their Facebook and Twitter pages. Related headlines St. Jude Medical Center in Fullerton to add new patient tower UC Irvine to create a medical industry research center Hoag unveils new model for cardiac care |
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Readers Feedback:
Thank you for running this piece and helping spread awareness of rare disease including my own - fibromuscular dysplasia.
| Comment at 2/7/2012 |
