All the latest news from the team at Rare Genomics Institute including patient success stories, research, events and more.
Rare Genomics Institute (RG) presented at the 2015 BIO International Convention, the largest global event for the biotech Paul_BioConvention Photoindustry. The event took place June 15th – 18th, in Philadelphia, Pennsylvania.
Read MoreRare Genomics Institute: Infographic (Accelerating Cures across the Rare Disease Landscape)
The dynamically changing landscape of rare disease treatments is largely attributed to increasing global awareness. Rare Genomics Institute (RG) is playing a major role empowering the rare disease patient and accelerating cures.
Read MoreThe former CEO of the Defence Materiel Organisation, Warren King, was recently awarded the U.S. Secretary of Defense medal for outstanding public service, an award previously given to officials such as Hillary Clinton. When told he would be able to bring a guest to the ceremony, he had a surprising choice.
Read MoreThe new Executive Director of Rare Genomics Institute (RG), Mr. Paul Schindler, attended the DC Health 2.0 STAT – the venue for Washington DC health practitioners to gather, exchange, and learn from others working on like challenges.
Read MoreSince he was born, Harrison Snow had suffered from an undiagnosed muscular disease that led to difficulties speaking, swallowing, and breathing. He spent nearly every day in a state of fatigue and exhaustion. After four years of searching for a diagnosis, his family contacted the Rare Genomics Institute.
Read MoreRG 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.
Read MoreRG is currently recruiting patients needing help with funding for exome sequencing for participation in our Amplify Hope initiative, a Templeton grant-funded study to measure the effectiveness of different methods of crowdfunding. Participants and their families will be given training on crowdfunding, and then launch a campaign for sequencing. RG has worked with our sequencing site partners to offer savings for all participants. To learn more, visit our Amplify Hope website.
Dr. Jimmy Lin, Rare Genomics Institute (RG) President, spoke at the 2015 Paris Assembly that took place April 16-18 at the Institut Pasteur in Paris, France. Dr. Lin presented to an audience comprising of scientists, entrepreneurs, and government personnel coming together on the theme “Connecting Open Research, Open Education and Open Social Impact”.
Read MoreLabroots, a partner of RG, is hosting a free conference on a wide range of genetics and genomics. This is a great opportunity for rare genomics researchers to learn about recent developments in their field.
Read MoreJoaquin_NeuronsFor 3 year old Joaquin from Chile, it all began with his foot bending inward.
Read MoreDoctors ruled out foot sprain. Then came the downward spiral. Increasingly he was losing motor control and had difficulty walking. He underwent a battery of tests, x-rays, magnetic resonance, but there was no diagnosis. Physical therapy proved futile. Generalized, progressive dystonia was ruled out too.
Read MoreOn February 6, Rare Genomics Institute President Dr. Jimmy Lin was the featured speaker at Startup Weekend: HEALTHbio in St. Louis, the region’s first Startup Weekend specifically focused on healthcare, life science, and related technologies and services.
Read MoreThe Rare Genomics Institute is hosting a webinar March 30th at 1 PM EDT / 10 AM PDT (USA Time) on our 2015 BeHEARD competition, which is awarding over $600,000 worth of technology grants to rare disease researchers and foundations.
Read MoreGood St. is a non-profit where members pledge to give a small amount (as little as 25¢) to one of two different featured charities every day. Recently, Good St.’s cause of the day was Rare Diseases, and RGI was selected as one of their two featured charities.
Read MoreRareShare has created a space for over 7,000 rare disease communities, with the philosophy that no matter how small the group, even two people can share their experiences and create a community.
Read MoreNoah and Alexis Beery are two of the world’s first children to have their lives transformed by precision medicine: they have a rare disease that causes irregular levels of serotonin and dopamine, which was diagnosed with genomic sequencing.
Read MoreG is pleased to announce the BeHEARD (Helping Empower and Accelerate Research Discoveries) challenge, a science competition aiming to accelerate personalized rare disease research.
Read MoreThe Scripps Translational Science Institute, in conjunction with the San Diego Medical Examiner, is launching a study that will use genomic sequencing to help explain the causes of mysterious, sudden deaths in otherwise healthy children, adults, and infants.
Read MoreRG had the privilege of helping a patient who was referred by the leader of Hailey-Hailey Disease (HHD) Worldwide Support Group. The patient has a very rare and debilitating blistering skin condition known as Hailey-Hailey Disease.
Read MoreSpeaking at Georgetown University’s Innovation Center for Biomedical Informatics (ICBI), Dr. Jimmy Lin, President of Rare Genomics Institute, expounded on how the current genomic revolution has made gradual but undeniable foray into making “raGeorgetown_University_wikicommons_1re diseases rare”.
Read MoreDid you know?
An estimated 250 million people worldwide are suffering from a rare disease.
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