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February 2017 Newsletter

Publication date: 17 Feb 2017

RareShare News
February 2017

Welcome to the new RareShare!

RareShare is pleased to announce the February 28, 2017 launch of our new redesigned website– an online community where those affected by rare diseases can find support, guidance and information. It is hoped that this will be an active space where the isolation and uncertainty accompanying a rare disease diagnosis can be partially lifted. The website launch date coincides with Rare Disease Day, an annual event to promote awareness of rare diseases and their impact.
Prepare for a temporary shut down
To support the transition to the new website, the existing site will be shut down on February 21 and the new one will be operational on February 28.

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.

RareShare is Part of the Rare Genomics Institute
RareShare, with its online rare disease social network, is a fully integrated part of the Rare Genomics Institute (RG). RG is a non-profit organization that helps patients with rare diseases receive genetic sequencing and connects them with an expert network to provide information about their disorder and hope that a cure can be found. The organization focuses on the needs of the individual patient in overcoming barriers to understanding their disease and accessing appropriate care.

The alliance of RareShare with RG allows patients to connect with their rare disease community online, enabling the sharing of experiences, best practices and access to resources. Through its advocacy of patient-specific needs for rare diseases, RG is at the forefront of efforts moving toward the practice of precision medicine. To learn more about RG, visit
One of our first success stories was Robert Stone, who was diagnosed with one of only 9 cases of Dystonia 16 worldwide. Read more about Robert’s story on the RareShare website(Available on Feb 28th).
At Rare Genomics, we love keeping in touch with our families! A couple years ago, Robert and his family (center) were able to join an RG team barbecue in Washington, DC.

Featured podcasts on rare disease patient navigation and more!

Did you know that RareShare has a podcast channel? Our podcasts are a direct extension of our overall mission to be a source of hope and support to rare disease communities. We regularly talk to both experts and patients to find out more about living with rare diseases. Listen to our latest patient navigation podcast where Arturo Porzecanski, a rare disease patient and advocate, gives tips on choosing hospitals and doctors. You can find more podcasts, including our Ask the Expert series on our RareShare podcast channel. Visit us by clicking below.

Podcasts (available on Feb 28th)

Read eBooks on specific rare diseases.

Part of RareShare’s mission is to encourage and educate families, researchers and medical professionals in the fight against rare diseases. In addition to scientifically reviewed summaries on the community pages for many diseases, we create and offer eBooks on specific topics based on interactions with leading medical experts. Check out our latest eBook on antisynthetase syndrome and more by clicking below.


eBooks (available on Feb 28th)
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