Global Genes
EIN: 26-3331487
Mission
Global Genes' mission is to drive change through the support of rare disease patients and families while equipping advocacy leaders with important tools, resources, mentoring, and connections to further advance awareness, education, and research.
Ruling year
2009
CEO
Charlene Son Rigby
Main address
1012 14th Street NW Suite 500
Washington, DC 20005 USA
Formerly known as
The Children's Project Charity
RARE Project
EIN
26-3331487
Diseases and conditions
Population served
Adults
Families
Children and youth
Ethnic and racial groups
Caregivers
NTEE code
ances & Advocacy (Gll)
(Bon)
IRS subsection
501(c)(3) Public Charity
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
Tax forms
Communication
Programs and results
What we aim to solve
Recognizing that Rare Disease impacts 1 in 10 individuals, and with 10,000+ rare diseases and growing, we help bridge the gaps needed to scale our support for the growing needs of this incredible community. We have always recognized our critical role in helping patients and advocates early in their journey, providing them with access to tools, resources, mentors, and those that can help them thrive and flourish. From self-care and mental health support to early research partnerships and biopharma collaborations, Global Genes has continued to work alongside these incredible advocates helping enable these important efforts for their disease community and the people they call part of their disease family. Our work breaks down silos by facilitating collaboration between disease organizations, enables researchers to accelerate treatments for all, and addresses critical needs through educational content and resources for the entire community.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
RARE Concierge - Patient Services Program
RARE Concierge is a free patient navigation service staffed by empathetic individuals who bring extensive knowledge of the lived experience and expertise in the field of rare diseases and genetics. This service serves the global population.
Our Patient Service Guides provide personalized answers to help patients, families, and caregivers on their unique rare disease journey, whether diagnosed or undiagnosed.
As a centralized hub of information, resources, support, and connections for the rare disease community, the RARE Concierge team is here for the community whenever needed, to:
- Offer support and understanding
- Provide connection to the rare disease community
- Provide direction on how to obtain a diagnosis
- Find a specialist, center of excellence, or care resource
- Share research or clinical trials in their disease
- Locate social, emotional, or mental support
- Identify financial resources to help with treatment, travel, or care
In-Person Events
Global Genes in-person events include RARE Drug Development Symposium and Week in RARE. These events provide education and networking opportunities for stakeholders across the community. We aim to have the greatest impact on the lives of people with rare diseases by bringing together the entire community around different themes - advocacy, support for those directly affected by rare disease, health equity, organizational skill building, research, and drug development to equip advocates with the knowledge, skills, and connections they need to advance therapies and awareness for their communities.
RARE-X
This research program of Global Genes, provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease. Using the RARE-X platform, participants and their collaborators will gather and share high-quality, regulatory fit-for-purpose data, while improving efficiencies and generating insights.
RARE Storytelling
Our storytelling initiative empowers individuals, caregivers, and advocates to share their stories of rare diseases through various media forms. Our team of dedicated experts will provide comprehensive outlines, resources, and tools on how to effectively convey these stories. Sharing personal stories, not only inspires others to share but also gives individuals a powerful voice, helps drive new research forward, and advocates for better healthcare policies.
Global Advocacy Alliance
This group consists of a global community of non-profit organizations and support groups who are committed to changing the way the world tackles rare diseases by collaborating to realize positive change. Joining the Global Advocacy Alliance will allow non-profit and rare disease support groups to enjoy added benefits, high-touch communications from our Global Genes team, and more engagement with fellow Global Advocacy Alliance members.
Corporate Alliance
The Corporate Alliance is a membership-based program open to pharmaceutical and biotech companies, industry and academia that want to support patient education, community building, and improved access to approved rare disease treatments. This group collaborates with rare patient communities to meet vital needs, address inequities, and drive progress toward treatments and cures.
Where we work
Photos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of conference attendees
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
As of 2023, Global Genes hosts two annual in-person events: RARE Advocacy Summit and Week in RARE (formerly known as Patient Advocacy Summit, RARE Advocacy Summit, RARE Health Equity Summit/Forum).
Number of press releases developed and distributed
This metric is no longer tracked.Totals By Year
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Goals & Strategy
Reports and documents
Download strategic planLearn 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?
The rare disease community is at a critical juncture. We need a coordinated and collaborative approach, fueled by expanded funding to expedite this work at a pace that matches the urgent and life-altering nature of these diseases. We are working to scale our programs, our reach and support, and our impact.
Global Genes' goal is to continue providing support to those impacted by rare disease through a range of support programs and educational resources focused on advocacy, organization building, awareness, and research enablement. We have empowered over 6 million patients and advocates across 100 countries and worked with more than 1,000 non-profit partners to realize our shared vision: a world unburdened by rare diseases. Our work focuses on tangible action through empowerment. Here are some highlights.
.
What are the organization's key strategies for making this happen?
Key strategies for the year 2024 include:
1) Support: Provide support to those impacted by rare disease through a range of support programs that fit their needs from individual to caregiver to patient organization leader.
- The Global Advocacy Alliance is a community of non-profit organizations and support groups that are committed to changing the way the world tackles rare diseases. Together, more than 700 organizations from around the world are working to build awareness for rare diseases, create community and support networks, drive toward treatments and cures, provide direct patient assistance programs, educate healthcare professionals and more
- The Global Genes RARE Concierge team directs patients, caregivers, advocates, and HCPs to information, education, and support services they need. No matter where someone is in their journey or where they live, Global Genes helps connect them to clinical trials and research, PAGs, experts in their area, and financial and support resources.
- The Global Genes Corporate Alliance is a partnership of like-minded industry stakeholders committed to improving the lives of people who have rare diseases. Through the Alliance, industry contributes to developing, expanding, and ensuring access to
programs that engage, enable, and equip people to effectively drive progress within and across rare disease.
2) Education: Provide educational resources focused on advocacy, organization building, awareness, and research enablement through reports, toolkits, webinars, and in-person events
- Toolkits like Gene-Based Diagnosis provides insights from rare advocates and experts who have personal experience – professional and personal – and will help equip individuals and families with the tools needed to start your journey through genetic testing with confidence.
- Blogs like How to Talk to Your Family About Your Family History, Effectively Communicate Your Rare Disease Journey to Healthcare Providers, and Why Sharing Your Rare Disease Story Can Help empower individuals and families on how to confidently approach advocating for themselves while spreading awareness.
3) Research-Readiness: Provide awareness through research readiness, and using
a collaborative approach that involves biopharma, researchers and funders, with data as a central core. Resources cover data enablement, science/research enablement, and partnering.
- RARE-X, a research program of Global Genes, provides a collaborative platform for global data sharing and analysis to accelerate treatments for rare disease
4) Mental Health Awareness: Empower rare patients and advocates with a dedicated emphasis on mental health through valuable resources and strategic partnerships.
- Provided a series of webinars in partnership with Cure JM focused on mental health for the caregiver and Coping Skills to Help Kids Living with a Chronic Illness.
What are the organization's capabilities for doing this?
What have they accomplished so far and what's next?
Financials
Financial documents
Download audited financialsRevenue vs. expenses: breakdown
Liquidity in 2022 info
0.87
Months of cash in 2022 info
2.1
Fringe rate in 2022 info
11%
Funding sources info
Assets & liabilities info
Financial data
Global Genes
Balance sheetFiscal Year: Jan 01 - Dec 31
The balance sheet gives a snapshot of the financial health of an organization at a particular point in time. An organization's total assets should generally exceed its total liabilities, or it cannot survive long, but the types of assets and liabilities must also be considered. For instance, an organization's current assets (cash, receivables, securities, etc.) should be sufficient to cover its current liabilities (payables, deferred revenue, current year loan, and note payments). Otherwise, the organization may face solvency problems. On the other hand, an organization whose cash and equivalents greatly exceed its current liabilities might not be putting its money to best use.
Fiscal Year: Jan 01 - Dec 31
This snapshot of Global Genes’s financial trends applies Nonprofit Finance Fund® analysis to data hosted by GuideStar. While it highlights the data that matter most, remember that context is key – numbers only tell part of any story.
Created in partnership with
Business model indicators
| Profitability info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Unrestricted surplus (deficit) before depreciation | $204,070 | $672,776 | $508,850 | $502,097 | -$1,816,653 |
| As % of expenses | 4.6% | 10.5% | 10.0% | 9.1% | -23.6% |
| Unrestricted surplus (deficit) after depreciation | $199,042 | $614,170 | $439,449 | $435,235 | -$1,827,570 |
| As % of expenses | 4.4% | 9.5% | 8.5% | 7.8% | -23.7% |
| Revenue composition info | |||||
|---|---|---|---|---|---|
| Total revenue (unrestricted & restricted) | $4,930,932 | $6,988,193 | $5,567,077 | $5,883,997 | $5,557,435 |
| Total revenue, % change over prior year | 30.3% | 41.7% | -20.3% | 5.7% | -5.6% |
| Program services revenue | 0.0% | 23.9% | 30.3% | 29.2% | 30.4% |
| Membership dues | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Investment income | 0.0% | 0.3% | 0.2% | 0.0% | 0.0% |
| Government grants | 0.0% | 0.0% | 5.1% | 0.0% | 0.0% |
| All other grants and contributions | 100.0% | 75.8% | 64.3% | 70.9% | 69.5% |
| Other revenue | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Expense composition info | |||||
|---|---|---|---|---|---|
| Total expenses before depreciation | $4,471,398 | $6,406,101 | $5,097,024 | $5,490,555 | $7,689,272 |
| Total expenses, % change over prior year | 12.8% | 43.3% | -20.4% | 7.7% | 40.0% |
| Personnel | 33.5% | 31.8% | 51.2% | 38.5% | 33.5% |
| Professional fees | 2.6% | 2.1% | 1.7% | 1.9% | 1.4% |
| Occupancy | 2.6% | 1.8% | 2.3% | 2.2% | 1.1% |
| Interest | 0.0% | 0.0% | 0.0% | 0.0% | 0.0% |
| Pass-through | 8.5% | 10.9% | 11.8% | 4.9% | 6.1% |
| All other expenses | 52.8% | 53.4% | 33.0% | 52.5% | 57.9% |
| Full cost components (estimated) info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Total expenses (after depreciation) | $4,476,426 | $6,464,707 | $5,166,425 | $5,557,417 | $7,700,189 |
| One month of savings | $372,617 | $533,842 | $424,752 | $457,546 | $640,773 |
| Debt principal payment | $0 | $0 | $0 | $0 | $0 |
| Fixed asset additions | $196,509 | $0 | $0 | $0 | $0 |
| Total full costs (estimated) | $5,045,552 | $6,998,549 | $5,591,177 | $6,014,963 | $8,340,962 |
Capital structure indicators
| Liquidity info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Months of cash | 3.0 | 4.5 | 6.0 | 6.4 | 2.1 |
| Months of cash and investments | 3.0 | 4.5 | 6.0 | 6.4 | 2.1 |
| Months of estimated liquid unrestricted net assets | 1.8 | 2.5 | 4.4 | 5.2 | 0.8 |
| Balance sheet composition info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Cash | $1,105,306 | $2,405,810 | $2,535,442 | $2,929,240 | $1,371,786 |
| Investments | $0 | $0 | $0 | $0 | $0 |
| Receivables | $178,125 | $154,718 | $153,336 | $59,565 | $533,727 |
| Gross land, buildings, equipment (LBE) | $291,452 | $295,961 | $294,220 | $265,704 | $207,533 |
| Accumulated depreciation (as a % of LBE) | 29.8% | 49.1% | 72.4% | 95.7% | 98.8% |
| Liabilities (as a % of assets) | 18.9% | 43.9% | 33.8% | 28.6% | 76.4% |
| Unrestricted net assets | $879,974 | $1,494,144 | $1,933,593 | $2,368,828 | $541,258 |
| Temporarily restricted net assets | $535,964 | N/A | N/A | N/A | N/A |
| Permanently restricted net assets | $0 | N/A | N/A | N/A | N/A |
| Total restricted net assets | $535,964 | $147,809 | $109,012 | $0 | $0 |
| Total net assets | $1,415,938 | $1,641,953 | $2,042,605 | $2,368,828 | $541,258 |
Key data checks
| Key data checks info | 2018 | 2019 | 2020 | 2021 | 2022 |
|---|---|---|---|---|---|
| Material data errors | No | No | No | No | No |
Operations
The people, governance practices, and partners that make the organization tick.
Documents
CEO
Charlene Son Rigby
Charlene Son Rigby has spent her career building organizations at the intersection of data, technology, and life sciences. Charlene was previously Chief Business Officer at Fabric Genomics and held executive roles at enterprise software and genomics companies, including Oracle and Doubletwist. She started her career in neuroscience research at Roche. When Charlenes daughter was diagnosed with a rare genetic disease, she co-founded the STXBP1 Foundation. She is committed to finding a cure for her daughters disorder. Charlenes unplanned connection between her personal life and profession has helped push forward the search for a cure for her daughter and kids like her and given her work deeper meaning. She holds a B.A. in Human Biology from Stanford University and an M.B.A. from the Haas School of Business at U.C. Berkeley.
Number of employees
Source: IRS Form 990
Global Genes
Officers, directors, trustees, and key employeesSOURCE: IRS Form 990
Compensation data
Global Genes
Highest paid employeesSOURCE: IRS Form 990
Compensation data
Global Genes
Board of directorsas of 08/26/2024
Board of directors data
- -
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
-
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 ? Not applicable -
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? Not applicable -
Board performance
Has the board conducted a formal, written self-assessment of its performance within the past three years? No
Organizational demographics
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
No data
Gender identity
No data
Transgender Identity
No data
Sexual orientation
No data
Disability
No data
Contractors
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