Los Angeles, CA February 28, 2017. Rare Genomics Institute (RG) is pleased to announce the launch of a new redesigned version of the rareshare.org website. As part of Rare Genomics, RareShare provides an online community where those affected by rare diseases can find support, guidance and information to help lift the isolation and uncertainty accompanying a rare disease diagnosis.
The new RareShare webpage will include direct links to features such as disease-specific eBooks and podcasts, and the “Ask the Expert” podcast series, which covers topics of broader interest to those affected by rare diseases, such as understanding clinical trials, insurance reimbursement and disease advocacy. Additionally, specific disease communities will provide accurate, up-to-date medical information that has been reviewed by physicians and disease experts. RareShare has approximately 8,000 members across about 1,000 different rare disease communities. Community members are encouraged to add information and content to their communities and work with RareShare and the Rare Genomics Institute to continue to grow and improve the website.
About Rare Genomics Institute
RG is a 501(c)(3) non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, RG helps custom design personalized research projects for diseases so rare that no organization exists to help. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable support for whatever type of research is necessary to get closer to rare disease therapeutics.
The new RareShare webpage will include direct links to features such as disease-specific eBooks and podcasts, and the “Ask the Expert” podcast series, which covers topics of broader interest to those affected by rare diseases, such as understanding clinical trials, insurance reimbursement and disease advocacy. Additionally, specific disease communities will provide accurate, up-to-date medical information that has been reviewed by physicians and disease experts. RareShare has approximately 8,000 members across about 1,000 different rare disease communities. Community members are encouraged to add information and content to their communities and work with RareShare and the Rare Genomics Institute to continue to grow and improve the website.
About Rare Genomics Institute
RG is a 501(c)(3) non-profit that makes cutting edge research technologies and experts accessible to rare disease patients. Partnering with top medical institutions, RG helps custom design personalized research projects for diseases so rare that no organization exists to help. By providing an expert network and an online crowdfunding mechanism, RG helps families source, design, and fund personalized research projects in diseases not otherwise studied. Ultimately, RG aims to expand on its current genome sequencing-focused approach to enable support for whatever type of research is necessary to get closer to rare disease therapeutics.
