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Global Genes

 28 Argonaut, Suite 150
 Aliso Viejo, CA 92656
[P] (949) 2487273
[F] --
www.globalgenes.org
www.theraredaily.org
[email protected]
Angela Rowe
FOUNDED: 2007
INCORPORATED: 2008
 Printable 1 Page Summary
 Printable Profile
Organization DBA --
Former Names RARE Project (2011)
The Children's Project Charity (2008)
Organization received a competitive grant from the community foundation in the past five years No
Employer Identification Number 26-3331487 00000

Summary


Mission StatementMORE »

Our mission is to connect,
empower, and inspire the rare
disease community. We envision
a globally connected community
equipped to eliminate the
challenges of rare disease.

Mission Statement

Our mission is to connect,
empower, and inspire the rare
disease community. We envision
a globally connected community
equipped to eliminate the
challenges of rare disease.

FinancialsMORE »

Fiscal Year 2018
Projected Expenses $3,800,000.00
Projected Revenue $4,500,000.00

ProgramsMORE »

  • RARE Toolkits
  • RARE Patient Advocacy Summit
  • RARE Tribute To Champions Of Hope
  • RARE Foundation Alliance
  • RARE Corporate Alliance

Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

For more details regarding the organization's financial information, select the financial tab and review available comments.


Overview


Mission Statement

Our mission is to connect,
empower, and inspire the rare
disease community. We envision
a globally connected community
equipped to eliminate the
challenges of rare disease.

Background Statement

The Problem: A rare disease by definition afflicts less than 200,000 people. This can make it difficult to find a diagnosis and treatment. It can also create substantial financial burdens for families. Charities and researchers seeking funding often find it difficult to garner the attention and resources they need because the diseases they focus on may affect so few people. The reality, though, is that there is nothing rare about rare diseases. While individually they affect few people, there are more than 7,000 rare diseases affecting nearly 30 million people in the United States and 350 million people globally - or one out of every 10 people - in the United States. The Solution: Global Genes will build an online community where patients with rare diseases, their families, and the organizations that support them will have the opportunity to communicate, collaborate, become educated and tap existing resources, helping them with their daily challenges. Global Genes works with skilled journalists to build and establish a comprehensive website, complete with interactive tools and in-depth content focused on research, policy and other developments around rare disease initiatives for individuals and the organizations that support them, a kind of CNN, or Newsweek for rare disease. In addition, Global Genes serves as an online home for people with rare diseases that will bring together families, organizations, physicians and researchers to exchange information and help each other. Global Genes raises awareness about the prevalence of rare diseases by providing a platform that allows those afflicted to share common problems, by providing access to relevant information, and facilitating introductions to those who can help organizations who provide support, and the scientific, business and academic industries, becoming a catalyst for communication & collaboration. This is accomplished by building alliances with the charities that support the individual diseases. Global Genes works to create greater awareness about pediatric rare disease on behalf of all those organizations that are working for individual rare diseases.

Impact Statement

Global Genes helps empower patient advocates to become successful activists. We will focus on these key targets over the next 3 years:
 
Education - Create resources & tools to equip advocates to become activists
 
Network - Unify the rare disease community, providing connections and catalyzing opportunities for collaboration
 
Science / Technology Innovation - Fund science/technology that can provide a demonstrated and immediate impact on the broader rare disease community (i.e. is “rare disease neutral/agnostic”).
 
Mainstream/Consumer Awareness (Global Awareness) - Become a globally recognized brand/non-profit that exists to support rare disease patients and other rare disease stakeholders

Needs Statement



CEO Statement

In the spirit of collaboration, we are building a community and platform online that will tie together parents affected by all rare diseases. We will work together with existing organizations, promoting their efforts, raising funds that benefit these organizations and families affected by rare disease. We have built a foundation of support that will exist to help the millions of rare disease families, their children and the caregivers that support them.

Board Chair Statement

Our job is to connect everyone whose lives have been influenced by rare diseases and those who want to generate viable solutions. We foster global connections for global challenges. – Wendy White, Board Chair


Other Ways to Donate/Volunteer

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Geographic Area Served

Throughout the United States
Central Orange County
West Orange County
South Orange County
North Orange County
Global Genes is an organization that is building rare disease advocacy groups globally.

Organization Categories

  1. Diseases Disorders & Medical Disciplines - Alliances & Advocacy
  2. Education -
  3. -

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Programs


RARE Toolkits

RARE Toolkits provide individuals with usable information on a variety of topics related to living with and/or advocating for rare disease patients. RARE Toolkits are created in collaboration with key rare disease stakeholders that have developed a vast array of subject matter expertise and believe in the importance of sharing these best practices. Current RARE Toolkits include topics such as: Drug Development, Support Groups, Informed Consent, Social Media, Fundraising, Informed Consent, and many more. Our toolkits cover an array of topics that touch on areas in Advocacy, Research and Access, Clinical Care, and Organizational Development. RARE Toolkits are interactive and will continue to evolve as advocates share additional best practices around these topics. These important resources are being made available online, as a print version that can be downloadable in a PDF format, and in print. 2017 topics include: Public Speaking; Working with the FDA; Advocating at School; Building Your Foundation; and Understanding Treatment Options.
Budget  $150,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served US& International Families Adults
Program Short-Term Success  Complete 30-toolkits in 2-languages with an outreach of 5,000 per toolkit
Program Long-Term Success 
Build out the largest and most in depth and impactful library of multilingual resources with global distribution
 
Identify global content partners and stakeholders with relevant expertise
 
 
 
Program Success Monitored By  We will be tracking success based on feedback from our community, toolkits requested and downloads from our website, and surveys requesting toolkit topic ideas. We analyze what subjects are most successful and which are still needed in order to provide a robust collection. 
Examples of Program Success  In 2017, Global Genes has already slotted to add 5 more titles to our growing library of toolkits, based on feedback received from our community. 

RARE Patient Advocacy Summit

Global Genes RARE Patient Advocacy Summit is the annual signature educational event bringing together rare disease stakeholders to learn, partner, connect, become activated and be inspired. Annually, the conference has grown in attendance to over 500 and has also provided opportunities for patients’ access to over 100 sessions via Livestream. Sponsors have many unique opportunities to raise awareness, show support, participate as thought leaders, and help provide disease communities with opportunities to learn and grow in capacity within the drug development process. It takes a village to help navigate the complex world of rare disease, and this conference helps patients design their roadmap for success.
Budget  $850,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served Families Adults Other Health/Disability
Program Short-Term Success  Grow Patient Advocacy Summit to 650 in-person and 7000 online participants
Program Long-Term Success  Grow Patient Advocacy Summit to 1000 in-person and 20000 online participants
Program Success Monitored By  Patient Summit success will be monitored by attendance in-person, online and through a survey.
Examples of Program Success  Each year Summit attendance has grown at least 10%, with a decrease in dropoff rate. We have needed to move to a larger venue for 2017 to accommodate the growing patient advocacy community. 

RARE Tribute To Champions Of Hope

Global Genes hosts its annual Tribute to recognize individuals that are making a significant difference for those living with rare disease. This annual event brings together over 600 patients, advocates, health care partners, health care philanthropists and people who #CareAboutRare. It has become one of the most highly anticipated events in rare disease annually, also bringing world class entertainment, celebrity, national and international media together all in an effort to raise awareness and support for patients in the rare disease fight.
Budget  $1,000,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served US& International Families Children and Youth (0 - 19 years)
Program Short-Term Success  Ability to bring together 700 changemakers to honor their success in the rare community. 
Program Long-Term Success  Ability to recognize every major player in the rare community making a huge impact for that year. Be able to bring 1000 members of the community together to celebrate the success and change that has been made for rare diseases. 
Program Success Monitored By  Monitored by amount of attendees, amount of awards given, and feedback from the community. 
Examples of Program Success  In 2016 we were able to have over 650 people in attendance, to celebrate the change they have made in the rare community. We honored 27 major changemakers for all they had done in 2016. 

RARE Foundation Alliance

The RARE Foundation Alliance is a coalition of 350+ rare disease foundations who understand that together we can be more effective, stronger and unified. These partners exchange best practices and share lessons learned to drive better outcomes for all those who participate regardless of disease. Global Genes aims to provide a culture of collaboration to support the activities of the RARE Foundation Alliance. Through the creation of an information exchange, the Foundation Alliance give rare organizations the opportunity to become stronger in many areas including: • Marketing • Research • Business Development • Networking • Public Policy • Scientific Advancement • Family and Patient Support • Capacity Building • Personal/Professional Development
Budget  $400,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served US& International Families Children and Youth (0 - 19 years)
Program Short-Term Success  Increase the Foundation alliance to 500 rare disease foundations, to give them a stronger united voice. 
Program Long-Term Success  We want to grow our coalition to 1000+ rare diseases represented to further their impact together. 
Program Success Monitored By  The number of foundations that participate in our alliance, the feedback given from participants, and the change made within each rare disease foundation. 
Examples of Program Success  --

RARE Corporate Alliance

The RARE Corporate Alliance™ is a collection of rare disease stakeholders committed to facilitating collaboration and an information exchange among patients, patient advocacy organizations, health-related organizations, industry, payers, policy makers and regulatory agencies. Only with all stakeholders at the table with an open, cooperative “we-can” spirit, will we effectively address issues facing the rare disease community. The mission of the RARE Corporate Alliance™ is to marry the resources and capabilities of industry and patient communities to improve health and expedite access to effective therapies for all patients with rare diseases. Membership: Membership is open to pharmaceutical and biotech companies, industry and academia. Associate membership is available for payers, policy makers and regulatory agencies.
Budget  $1,000,000.00
Category  Diseases, Disorders & Medical Disciplines, General/Other Medical Genetics
Population Served US& International
Program Short-Term Success  Break up the corporate alliance into committee groups that can focus on a new high need topic in the rare disease community every quarter, to find solutions to problems being faced. 
Program Long-Term Success  Have each committee within the Corporate Alliance compile 12 change making courses of action to further the development of treatments in rare diseases. 
Program Success Monitored By  Change making decisions that are made each year, growth of the foundation, feedback from foundation members, feedback from the rare community. 
Examples of Program Success  --

Management


CEO/Executive Director Mrs Angela C Rowe
CEO Term Start July 2018
CEO Email [email protected]
CEO Experience Angie Rowe has served as the Executive Director of Global Genes since July 2018. She joined the team as Chief Operating Officer in March 2015 and brings over twenty years' worth of experience in executive management of LLCs and non-profits. Prior to her Global Genes tenure, Angie spent eight years managing and directing various aspects of the U.S. Bank OC Marathon and its related events. In this role, she also developed and implemented the OC Marathon Foundation’s successful Kids Run the OC program. Prior to the OC Marathon, Angie was President of the Junior League of Orange County, CA. Additionally, she has served on various non-profit boards throughout the county and has gained expertise in launching organizations and seeing them through their start-up phases. As a breast cancer survivor, Angie is acutely aware of the value of an accurate genetic diagnosis. She is passionate about connecting rare disease patients to the resources they need to thrive.

Former CEOs and Terms

Name Start End
Mrs. Nicole Boice Aug 2008 July 2018

Senior Staff

Name Title Experience/Biography
Mrs. Meredith Cagle -- --
Tiffany Leite Chief Program Officer --
Mrs. Angela Rowe Chief Financial Officer --

Awards

Award Awarding Organization Year
-- -- --

Affiliations

Affiliation Year
-- --

External Assessments and Accreditations

External Assessment or Accreditation Year
-- --

Collaborations

Global Genes RARE Foundation Alliance is made up of over 450 disease foundations that have committed to collaborating with Global Genes and other nonprofit foundations in order to create a stronger, collective voice in the rare disease community. A list of alliance members can be found at: https://globalgenes.org/foundation-alliance-2list
 

Staff Information

Number of Full Time Staff 16
Number of Part Time Staff 3
Number of Volunteers 10
Number of Contract Staff 5
Staff Retention Rate % 80%
Staff Professional Development Yes

Staff Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 14
Caucasian: 12
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 0
Other (if specified): 0
Gender Female: 14
Male: 2
Not Specified 0

Plans & Policies

Organization has Fundraising Plan? Yes
Organization has Strategic Plan? Yes
Years Strategic Plan Considers 3
Management Succession Plan Yes
Organization Policies And Procedures Yes
Business Continuity of Operations Plan Yes

Risk Management Provisions

Nondiscrimination Policy Yes
Whistle Blower Policy No
Document Destruction Policy Yes
Directors and Officers Insurance Policy Yes

Reporting and Evaluations

Management Reports to Board? Yes
CEO Formal Evaluation and Frequency Yes Annually
Senior Management Formal Evaluation and Frequency Yes Annually
Non Management Formal Evaluation and Frequency Yes Annually

Government Licenses

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CEO Comments

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Foundation Comments

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Governance


Board Chair Mrs. Wendy White
Board Chair Company Affiliation Dohmen Life Science Services
Board Chair Term Dec 2016 -
Board Co-Chair Mrs. Natalie Douglas
Board Co-Chair Company Affiliation Healthcare at Home
Board Co-Chair Term Dec 2016 -

Board Members

Name Company Affiliations Status
Mrs. Nicole Boice Global Genes Voting
Mr. John Crowley Amicus Therapeutics Voting
Ms. Natalie Douglas Healthcare at Home Voting
Mr. Hugh Hempel Spark PR Voting
Mrs. Caroline Loewy Tobira Therapeutics Voting
Mr. Brad Margus Exigence Neurosciences Voting
Mr. Peter Pellizzon Hollencrest Capital Management Voting
Ms. Susan Stein Connexion Voting
Mrs. Wendy White Siren Interactive Voting
Mr. Matt Wilsey Grace Wilsey Foundation Voting

Constituent Board Members

Name Company Affiliations Status
-- -- --

Youth Board Members

Name Company Affiliations Status
-- -- --

Additional Board Members and Affiliations

Name Company Affiliations Status
Mr. David Altshuler Global Alliance for Genomics & Health NonVoting
Ms. Beth Ann Baber Nicholas Conor Institute NonVoting
Ms. Marissa Brash -- NonVoting
Mr. Husdon Freeze Sanford-Burnham Medical Research Institute NonVoting
Deb Geraghty Advisor NonVoting
Mr. Peter Goodhand Global Alliance for Genomics & Health NonVoting
Mr. Stephen Groft NCATS/NiH NonVoting
Ms. Ayesha Khalid Harvard Medical School / MIT NonVoting
Mr. Harry Leider Walgreens NonVoting
Mr. Jimmy Lin Rare Genomics Institute NonVoting
Mrs. Maureen McArthur-Hart -- --
Ms. Jeanette McCarthy Genome Magazine / Big Science Media NonVoting
Mr. Tim Miller -- --
Mr. Ethan Perlstein Perlstein Labs NonVoting
Mr. Anthony Philippakis Broad Institute MIT & Harvard NonVoting
Mr. Ian Phillips Keck Graduate Institute NonVoting
Mr. Inderpal Randhawa UCLA NonVoting
Ms. Katherine Rauen UC Davis NonVoting
Mr. Robert Ring -- --
Mr. Jeffrey Sherman -- --
Mr. Alvin Shih -- --
Mr. Ryan Taft Illumina NonVoting
Mr. Keith Vaux UCSD NonVoting
Ms. Christina Waters RARE Science NonVoting

Board Demographics

Ethnicity African American/Black: 0
Asian American/Pacific Islander: 0
Caucasian: 0
Hispanic/Latino: 0
Native American/American Indian: 0
Other: 10
Other (if specified): 0
Gender Female: 5
Male: 5
Not Specified 0

Board Information

Board Term Lengths 3
Board Term Limits 10
Board Meeting Attendance % 90%
Written Board Selection Criteria Yes
Written Conflict Of Interest Policy Yes
Percentage of Monetary Contributions 90%
Percentage of In-Kind Contributions 10%
Board Orientation Yes

CEO Comments

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Foundation Comments

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Standing Committees

  • Audit, Compliance and Controls
  • Board Governance
  • Development / Fund Development / Fund Raising / Grant Writing / Major Gifts
  • Fiscal Affairs
  • Marketing

Financials


Revenue vs. Expense ($000s)

Expense Breakdown 2017 (%)

Expense Breakdown 2016 (%)

Expense Breakdown 2015 (%)

Fiscal Year Jan 01, 2018 to Dec 31, 2018
Projected Revenue $4,500,000.00
Projected Expenses $3,800,000.00
Form 990s

2017 Form 990

2016 Form 990

2015 990

2014 Form 990

2013 990

Audit Documents

2017 Audit Report

2016 Audited Financials

2015 Audited Financials

2014 Audited Financials

IRS Letter of Exemption

IRS Letter of Determination

Prior Three Years Total Revenue and Expense Totals

Fiscal Year 2017 2016 2015
Total Revenue $3,783,379 $3,565,642 $3,381,807
Total Expenses $3,986,746 $3,413,356 $3,136,661

Prior Three Years Revenue Sources

Revenue By Revenue Source
Fiscal Year 2017 2016 2015
Foundation and
Corporation Contributions
$3,519,285 $3,106,963 $2,717,117
Government Contributions $0 $0 $0
    Federal -- -- --
    State -- -- --
    Local -- -- --
    Unspecified -- -- $0
Individual Contributions -- -- --
Indirect Public Support -- -- $0
Earned Revenue -- -- $0
Investment Income, Net of Losses $346 $-182 $0
Membership Dues -- -- $0
Special Events $237,159 $458,861 $664,690
Revenue In-Kind $26,589 -- $6,608
Other -- -- $-664,690

Prior Three Years Expense Allocations

Expense By Type
Fiscal Year 2017 2016 2015
Program Expense $3,166,234 $2,948,835 $2,743,275
Administration Expense $556,922 $396,380 $259,402
Fundraising Expense $263,590 $68,141 $133,984
Payments to Affiliates -- -- $0
Total Revenue/Total Expenses 0.95 1.04 1.08
Program Expense/Total Expenses 79% 86% 87%
Fundraising Expense/Contributed Revenue 7% 2% 4%

Prior Three Years Assets and Liabilities

Assets and Liabilities
Fiscal Year 2017 2016 2015
Total Assets $1,189,128 $1,211,444 $1,024,830
Current Assets $1,175,887 $1,161,931 $938,543
Long-Term Liabilities -- $83,904 $75,681
Current Liabilities $227,696 $75,112 $49,155
Total Net Assets $961,432 $1,052,428 $899,994

Short Term Solvency

Fiscal Year 2017 2016 2015
Current Ratio: Current Assets/Current Liabilities 5.16 15.47 19.09

Long Term Solvency

Fiscal Year 2017 2016 2015
Long-term Liabilities/Total Assets 0% 7% 7%
Endowment Value --
Spending Policy Percentage
Percentage(If selected) 80%
Are you currently in a Capital Campaign? No
Capital Campaign Purpose --
Campaign Goal --
Capital Campaign Dates -
Capital Campaign Raised-to-Date Amount --
Capital Campaign Anticipated in Next 5 Years? No

CEO Comments

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Foundation Comments

Summary financial data is per the Form 990s and consultation with the organization. Foundation/corporate and individual contributions are combined under Foundation and Corporation Contributions.

Documents


Other Documents

No Other Documents currently available.