February 2017 Newsletter

With the revamped website and periodic newsletters, RareShare plans to offer more engagement with its rare disease communities. By striving to keep its content current, we expect to continually refresh the website and not allow communities to become dormant or stagnant. The refurbished RareShare aspires to be a vibrant, evolving space where patients, family members, caregivers, physicians, researchers and anyone interested in rare diseases can participate in an ongoing and focused effort to bring answers, support and treatment for the thousands of rare diseases that have been identified.

As part of the Rare Genomics Institute, a non-profit organization dedicated to help fund and to facilitate the genomic sequencing process for children with rare diseases, RareShare understands the “strength in numbers” approach that helps rare disease communities be seen and heard. The renovated RareShare website reaffirms the organization’s commitment to individuals affected by rare medical disorders, their families, and healthcare professionals. RareShare will continue to provide rare disease patient communities a platform where they can share experiences, coping strategies and advice, and have access to the latest research, resources and physician input.

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 or content to their communities and work with RareShare and the Rare Genomics Institute to continue to grow and improve the website.