Making Connections
We're bringing the benefits of genetic research to those who need it the most.

RARE GENOMICS NEWSLETTER

February 2024

Stay updated on the latest services, collaborations, and opportunities we have. At the same time, we'll share ways you can help us advocate for the needs of rare disease families. With your input and support, we can find new ways to do more!

2024 Rare Disease Day

Rare disease patients fight their disease every day. The mystery of the disease can go for many years without an official diagnosis, or coverage for needed tests and services. RG provides access to research and a possible diagnosis of their disease. As a non-profit, volunteer-run organization, we can’t do it without you!

Please support Rare Genomics on Rare Disease Day or any Day! Our work is volunteer based and we count on the kindness of others. Your donation goes to assist those who are struggling to find answers. We hope you can help us help others.

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2024 Informa Connect Rare Disease

Innovation and Partnering Summit

The 2024 Informa Connect Rare Disease Innovation and Partnering Summit is held this year between March 19th-21st. The summit will be a space that brings together organizations focused on rare diseases and orphan drug development with patient advocates, patient support/services, market access, and technological development. The summit is an opportunity to be exposed to new information and resources, discuss important issues and their solutions, and hear from patient’s voices that are driving drug discovery in the rare disease realm.

If you're also looking to connect with industry representatives, nonprofits, patients, and vendors, the summit will be a chance to help improve the quality of life for members in the rare disease community through education and advocacy. Held in Philadelphia, the summit will also host relevant experts and multidisciplinary stakeholders, including the FDA, Rare Revolution, Cornerstone Pharmaceuticals, and more. Key topics will be covered, including "Rapid Fire Case Studies Directly from the Thought Leaders Innovating in the Rare Disease Space" presented by Rare Genomics co- founder and Sudo BioSciences CBO Dr. Imran Barbar, and "Combatting Mental Health Challenges within Rare Disease," featuring founder and CEO of Angel Aid, Cristol Barrett O’Loughlin.

Rare Genomics Institute and BodiMetrics

Partner to Provide Rare Disease Patients with Wearable Devices

Washington, D.C. Aug 2 2023. The Rare Genomics Institute (RG) is pleased to announce that Bodimetrics, a medical device company that specializes in wearable ring oximeter that is accurate in all skin tones, will continue their support of the RG RareWear program by donating 40 circul+ smart rings to allow patients with cardiac, respiratory, and other conditions, as well as their families and clinicians, to monitor metrics relevant to their disease area and benefit from the real-time information these devices provide.
BodiMetrics is dedicated to developing and delivering innovative non-invasive devices that harness the power of technology to improve the wellness of patients wherever they may be. Thecircul+ Smart Ring is lightweight, adjustable in size, and easily slides on the finger. It is designed to help better understand sleep quality and how changes in fitness and lifestyle impact sleep quality. It helps improve the quality of sleep using customizable O2 thresholds and tracks SpO2, Heart Rate, and Motion for up to 12 hours. Additionally, circul+ is clinically validated and accurate for all skin tones supporting health equity for all.

Keep Reading

RG’s dedicated and talented volunteers deliver remarkable results for families in need of genetic sequencing services. We come from diverse backgrounds but work as a team to help people directly. We love what we do and we’re always looking for professional teammates. To learn a bit more about who we are and why we volunteer, watch the video above.

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