Giving Tuesday 2018 is Just Around the Corner

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This Giving Tuesday, we hope you will consider making a donation to the Rare Genomics Institute (RG).

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We were able to complete 62 projects which includes whole genome sequencing for over 180 individuals. Our latest Patient team called the Rare Genomics Task Force (RGTF), a consultation platform that allows patients to have their questions answered by experts for free, provided consultations for over 200 patients.

Here at RG, we’ve had a busy year! Our volunteers donated over 18,000 hours of their time to help rare disease patients. We want to keep our momentum rolling this year and in years to come. Since RG is completely volunteer-run, the only way we can do this is with a donation from you.

A donation to RG will help a rare disease patient in need. Our patients often have no other options for access to genetic sequencing which can reveal the cause of their disease as well as potential research avenues or treatments.

Thank you for your generous support,

Jimmy Lin, M.D., PhD, MHD

President/CEO, Rare Genomics Institute

P.S. If you are buying holiday gifts on Amazon this year, please consider using our AmazonSmile link. At absolutely no additional cost to you, 0.5% of your purchase amount will be donated to RG. As a non-profit, volunteer-run organization, every cent really does help rare disease patients. Just click on the following link and then continue shopping as usual: http://hubs.ly/y0jzrS0

Rare Genomics is featured in the German Documentary, Medical Research on the Move

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Last month the Nonfiction Society featured Rare Genomics Institute (RG) in a science documentary, which aired in German public television on September 13th, 2018. The documentary highlights “Medical research on the move, where organizations take initiative instead of blaming failing healthcare gaps or the pharmaceutical industry.” It is completely in German, but below is a synopsis of what RG contributed.

The documentary began by talking about the success of the Ice Bucket Challenge for ALS. It garnered over $100 million dollars of donations within a month of their campaign. During that time frame, over 28 million people joined the challenge by posting, commenting or liking a challenge post, Facebook said. Famed leaders and celebrities including Bill Gates, Charlie Sheen and Cristiano Ronaldo produced videos with about 16 million in views on YouTube at the time.

Through interviews with scientific experts worldwide, the documentary aimed to show the novel ways of funding medical research. They highlighted RG’s efforts for patients with rare diseases and interviewed Romina Ortiz, COO and VP of Patient Advocacy, to learn more about the Amplify Hope Study and current efforts by RG.

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RG President Jimmy Lin Selected as PCORI Advisory Panel Member

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RG President Dr. Jimmy Lin has been selected as a member of the Patient-Centered Research Outcomes Institute (PCORI) patient engagement panel. On the panel, Dr. Lin will work to prioritize PCORI’s research questions and develop meaningful patient and stakeholder engagement efforts.

PCORI is a non-profit, non-governmental organization, authorized by Congress in the 2010 Affordable Care Act. PCORI funds research aimed at improving patient care and outcomes through patient-centered clinical effectiveness research, or CER. The goal of PCORI’s work is to determine which healthcare options available to patients work best in particular circumstances.

Click here for more information on PCORI and Dr. Lin’s role.