RARE GENOMICS INSTITUTE INC
Empowering patients today, Accelerating the Cures of Tomorrow
Programs and results
What we aim to solve
A disease is rare when it affects fewer than 200,000 Americans at a given time or fewer than 1:2,000 people in Europe. RG helps design personalized research projects, provides expert analysis and recommendations, and connects patients to case-specific researchers for precision medicine development.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
RareREACH
RareREACH (Research, Education, Advocacy, Community and Hope) is an innovative program, developed by RG, which places patients at the center of finding a cure. Our Patient Advocacy Team works directly with patients, caregivers, and referring physicians to guide and coordinate whole exome and whole genome sequencing with partnering RG laboratories. RG has partnered with 8 sequencing sites to provide our patients with whole exome sequencing (WES).
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Total number of organization members
This metric is no longer tracked.Totals By Year
Number of patient consultations
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Number of overall donors
This metric is no longer tracked.Totals By Year
Average number of dollars received per donor
This metric is no longer tracked.Totals By Year
Context Notes
Average dollar amount donated to 2016 Year End Fundraising Campaign
Average number of days between a request for services and an actual meeting with a service provider
This metric is no longer tracked.Totals By Year
Donation multiplier (dollars of service provided per dollar donated)
This metric is no longer tracked.Totals By Year
Number of patients receiving genome analysis
This metric is no longer tracked.Totals By Year
Context Notes
Total to date
Percent improvement in diagnosis rate from genome analysis
This metric is no longer tracked.Totals By Year
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
To help individuals with rare disease obtain genetic sequencing data to help better understand their disease
What are the organization's key strategies for making this happen?
Unique diagnostic opportunities: We connect families, physicians, and scientists who would otherwise not have found one another through our “RG sites". An RG site consists of a research facility that is able to perform DNA sequencing and a clinician and/or scientist that can interpret the data from sequencing.
Individual attention from patient advocates: Once you apply to RG, you are assigned a patient advocate that will work with you to identify the site that best matches your needs and guide you all the way through sequencing and results. We will be with you every step of the way!
Funding Opportunities: Genome sequencing can be a significant financial burden for many families. To ensure that a family is not excluded from this technology due to lack of funds or insurance, we have created an individualized crowdfunding platform that allows families to fundraise for their child.
Passionate expert volunteers: RG has a significant volunteer-base, and almost all of our volunteers hold, or are pursuing, graduate degrees in science, medicine, business, and law and we truly care about the issues affecting families with rare genetic disorders.
What are the organization's capabilities for doing this?
We have recruited a number of researchers and clinicians from top research institutions around the world. Through us, patients can gain access to world-class genomic sequencing and interpretation services. Rare Genomics Institute has helped organize 15 successful crowdfunding campaigns to cover the costs of Whole Exome Sequencing - totaling nearly $60,000 in funds raised. We have published 2 eBooks and 15 "Ask the Expert" podcasts for the purpose of educating patients, advocates, and healthcare professionals. We currently have a volunteer workforce of 175 individuals with unique expertise spanning marketing to clinical sequencing to research. Additionally, we have a 10,000-member social network dedicated to rare diseases, Rareshare.org.
What have they accomplished so far and what's next?
RG has helped 500 families affected by rare diseases over the past 6 years. Our diagnosis rate for patients with rare diseases is 15-20% improved over traditional diagnostics. The time it takes to acquire sequencing and receive a diagnosis is reduced to an average of 1 year for RG patients, compared to the industry standard of 4.8 years. As of June 2017, RareREACH has carried out Whole Exome/Genome Sequencing for 78 undiagnosed rare disease patients (a value of $1.4M of donated or crowdfunded clinical sequencing services). Rareshare.org has surpassed the 10,000 member-mark. Frost & Sullivan, an independent market research firm, conducted an external evaluation and awarded RG their 2016 Customer Value Leadership Award.
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
RARE GENOMICS INSTITUTE INC
Board of directorsas of 07/08/2019
Dr. Jimmy Lin
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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Board orientation and education
Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes -
CEO oversight
Has the board conducted a formal, written assessment of the chief executive within the past year ? No -
Ethics and transparency
Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes -
Board composition
Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No