Global Genes

Allies in Rare Disease

Aliso Viejo, CA   |  www.globalgenes.org

Mission

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.

Ruling year info

2009

CEO

Ms Kimberly Haugstad

Main address

28 Argonaut Suite 150

Aliso Viejo, CA 92656 USA

Show more contact info

Formerly known as

The Children's Project Charity

RARE Project

EIN

26-3331487

NTEE code info

ances & Advocacy (Gll)

(Bon)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The rare disease patient community of 350 million globally is larger than the AIDS and cancer communities combined. Currently, there are 7,000 distinct rare diseases worldwide and that number is growing every year. At Global Genes, we believe that together we must do more to tackle the challenges that rare disease families and communities face.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

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.

Population(s) Served

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.

Population(s) Served

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

Population(s) Served

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.

Population(s) Served

Where we work

Our results

SOURCE: Self-reported by organization

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
Related Program

RARE Patient Advocacy Summit

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Our RARE Patient Advocacy Summit keeps growing exponentially each year. We've outgrown our current venue and will switch to San Diego starting in 2019. Join us!

Number of manuals produced

This metric is no longer tracked.
Totals By Year
Related Program

RARE Toolkits

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Toolkits provide the RARE Community with helpful learning opportunities. As of 1/1/2019, we have a total of 35 Toolkit topics available in either print or downloadable format.

Average grant amount

This metric is no longer tracked.
Totals By Year
Related Program

RARE Foundation Alliance

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Through 2019, we've funded over $550,000 in Rare Patient Impact Grants.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

Since our inception ten years ago, Global Genes has become a highly regarded rare disease organization, due to our relevance to patients and rare disease communities. Currently working with thousands of individuals and over 540 patient organizations through our Foundation Alliance, Global Genes has emerged as the go-to organization for rare disease patients.

Global Genes 2020 goal is to create more value and touch points for patients, with an emphasis on building and supporting a growing international footprint. Global Genes is expanding our ability to educate, equip, and empower patients and advocates through educational resources, online learning platforms, and events. We recently launched a new RARE Online Hub (www.globalgenes.org ). Through this platform, and via a continued commitment to sustain and expand existing programs, we will be well-positioned to activate a movement and mobilize rare disease patient advocates globally.

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Key strategies for the year 2020 include:

Patient Engagement - Expand our programs, tools and resources:
●Genetic counseling services and one-on-one patient inquiry responses via the RARE Concierge program and strategic partnerships with academic institutions and non-profit organizations.
●Foundation Alliance membership and service growth to include personalized counseling, access to mentors and other rare disease advocacy leaders, and an expanded toolbox of community-building resources.
●Empower advocates/patient groups to create new, organized communities. Support small groups to stand up patient advocacy organizations, provide capacity-building mentorship and roadmaps for patient engagement opportunities.
●Patient Impact Grant Program - provide funds for organizations to support new research projects, creation of registries, capacity building, and other disease specific initiatives.
●Globalization of services- increase access to programs, resources, tools, and events (directly and through the Global Genes Hub). Offer translation and partnerships to facilitate expanded reach and support for patients and advocates internationally.

Strengthen Community - Increase rare disease awareness and facilitate connections:
●Annual conferences and events (RARE Patient Advocacy Summit, RARE Global Advocacy Leadership Symposium, RARE Drug Development Symposium, and the RARE on the Road Leadership Tour) which bring together thousands of patients and advocates from around the globe.
●Extensive social media presence and activity, one-on-one outreach and patient inquiry response.

Technology and Infrastructure
●The Global Genes Hub, an online source of tools and resources that will provide immediate and personalized access to relevant information and will exponentially connect families and advocates and facilitate resource sharing and collaboration.
●Continued free access to the largest collaborative content marketplace in rare disease, globally.
●RARE University, an on-demand e-learning platform to provide expansive content on specific topics

Global Genes employs a team of committed, compassionate individuals who are committed to ensuring that rare disease families are supported. We have a growing team of qualified individuals and a board/advisors who actively contribute to our strategic vision, planning and execution. Beyond their business, science and patient service expertise, many staff and advisors are personally impacted by rare disease, which ensures that decisions being made remain relevant and compelling to those whom we serve.

We are the central hub for advocacy and support for the 7,000+ rare diseases affecting 350 million people globally.

We are celebrating our first decade as an organization, and have already helped advocate for over 75,000 rare disease families worldwide.

We've built a coalition of 500+ rare disease foundations through Global Genes' RARE Foundation Alliance, to exchange best practices, drive better outcomes for all members, and achieve greater impact across the rare disease community.

The Global Genes RARE Corporate Alliance, comprised of nearly 100 industry members, convenes experts and brings valuable patient insights to industry efforts.

Our Medical Scientific Advisory Board convenes the best leaders in science and academia to provide strategic insight in research, clinical care, emerging technologies, and drug development.

We've published comprehensive educational toolkits on more than 35 topics ranging from advocacy to genetic, drug development to organizational development.

Global Genes' annual conferences and events bring together hundreds of patients and advocates from countries around the globe each year.

Through the RARE PAtient Impact Grant Program, we've provided more than $400,000 in small grants to over 50 patient organizations - resulting in a collective impact of 1.5 million individuals over the last 3 years.

The RARE Concierge program, staffed by genetic counselors, assists over 350 patients, advocates, and caregivers every year.

We are at the start of a very important journey, with much work to do. According to estimates from the National Institutes of Health, nearly 95% of all rare diseases do not have a single drug treatment approved by the FDA, and of the 7000 rare diseases there are currently no cures. At Global Genes, we believe that together we can do more to tackle the challenges that rare disease families and communities face.

Financials

Global Genes
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Compare nonprofit financials to similar organizations

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Global Genes

Board of directors
as of 3/2/2020
SOURCE: Self-reported by organization
Board co-chair

Ms. Wendy White

Dohmen Life Science Services

Term: 2016 -


Board co-chair

Ms. Natalie Douglas

Healthcare at Home

Term: 2016 -

Hugh Hempel

Spark PR

John Crowley

Amicus Therapeutics

Peter Pellizzon

Hollencrest Capital Management

Natalie Douglas

Healthcare at Home

Caroline Loewy

Tobira Therapeutics

Wendy White

Siren Interactive

Matt Wilsey

Grace Wilsey Foundation

Brad Margus

Exigence Neurosciences

Susan Stein

Connexion

Nicole Boice

Global Genes

Board leadership practices

SOURCE: Self-reported by organization

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