GENETIC ALLIANCE INC

Damascus, MD   |  www.geneticalliance.org

Mission

Since its founding, Genetic Alliance has been the voice of advocacy in genetics. We empower others to make their voices heard. Advocacy in the 21st century, however, requires new definitions and new focus. We dissolve boundaries to foster dialogue that includes all stakeholders: from industry professionals, researchers, healthcare providers, and public policy leaders to individuals, families, and communities.

Notes from the nonprofit

Genetic Alliance Council Genetic Alliance engages individuals, families and communities to transform health. This requires that we as an organization understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness. We understand that to transform systems, we must start with our own, beginning with our very person. Such work calls us, both personally and professionally, to explore the deepest truths about ourselves and the systems we impact. The Genetic Alliance Council, the governing body, must create space that supports and manifests visioning and transformation at the deepest level. Genetic Alliance requires a structure that goes beyond governance, towards a deeper stewardship that serves openness and supports the rigorous process of self–discovery (awareness) required during our decision–making. We believe that through the sharing of self we discover the greater Self, the communal We.

Ruling year info

1988

CEO

Sharon Fontaine Terry

Main address

26400 Woodfield Rd #189

Damascus, MD 20872-7509 USA

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Formerly known as

Alliance for Genetic Support Groups

EIN

52-1571905

NTEE code info

Alliance/Advocacy Organizations (G01)

Alliance/Advocacy Organizations (H01)

Alliance/Advocacy Organizations (E01)

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

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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?

Research Services

Research Planning: we help consolidate stakeholder input, organize objectives, determine study criteria, and generate research frameworks. GA assists in all steps to develop clear and compelling research plans.

Protocol Writing Support: with experience writing nearly every protocol, from registry and biobank-governing protocols to biomarker and natural history study protocols, we help with all the components required for IRB submission.

Study Implementation: GA can support with all aspects of research studies, from project management to direct support for outreach, recruitment, retention, and more.

BioBank: GA has run BioBank for 20 years, providing organizations a secure and affordable place to store samples, applying best practices for collecting, organizing, and holding samples.

Registry support services including registry governance, research topic prioritization, survey design, recruitment, retention.

Data Analysis & Publication Support: Turn data into valuable insights.

Population(s) Served

Genetic Alliance provides training and education services including:

Support for Staff and Community
We offer workshops for individuals and organizations who seek a supportive environment and renewed connection with their being, vitality, and values. We can assess how to relieve burnout, refocus, and rejuvenate your staff. We can offer support to help your members deal with suffering, grief, and loss. We can train organizations and staff to use simple tools to sustain them in their mission.

Research Bootcamp
We offer advocates, advocacy organizations, and other community groups the information, strategies, and support needed to manage a dynamic research program. See more in the "Research Bootcamp" section.

Messaging and Communications
We can support communication needs from simple social media posts to full blown published research papers. We can build comprehensive programs with our deep knowledge of communities, making this work clear and relevant.

Population(s) Served

Genetic Alliance provides engagement services including:

Community Development
We have tools and training for anyone to understand what their community needs, how their needs are best met, and what can be done to meet and recognize their experience.

Registry Management
Our experts in registry development and management, recruitment, retention, data visualization and analysis can help anyone with any aspect of their registry.

Partnership Building
Genetic Alliance has engaged patients, communities, clinicians, researchers, and policy makers since our founding in 1986. We have been at the forefront of all of the major initiatives in genetics, genomics, citizen science, global equity, and more. Including we are co-founders of the NAM Genomics Roundtable, the NAM Regenerative Medicine Forum, GA4GH, and International Rare Disease Research Consortium. We convene, we sus out what matters, and we facilitate strategic partnerships that are measurable and impactful.

Population(s) Served

iHope™ Genetic Health is a program governed, managed, and operated by Genetic Alliance that will eliminate the barriers to genomic insights for tens of thousands of individuals across the globe each year. Leveraging contributions of genomic sequencing technology from Illumina Inc, storage and computational support from Amazon Web Services (AWS), patient-centered data control from LunaPBC, the iHope™ Genetic Health program will enable genomic testing across the globe.

There is a desperate need to make genomic medicine available to all individuals regardless of their social status, income, or geographic location. Across the globe, there are at least 300 million people with an undiagnosed rare genetic condition, and in geographies where specialists are limited and clinical resources are sparse there is an imperative to close the genomic medicine gap, and in doing so, leapfrog these populations into next-generation care.

Population(s) Served

Expecting Health meets a critical need in the healthcare delivery landscape by engaging and educating consumers. We have tools that lead to more informed decision-making, whatever stage you and your family are in. If you have a young child, are eagerly awaiting the imminent arrival of a new addition to your family, or are just starting to plan your future, we can help you navigate the complex healthcare delivery system, including the myriad screening and testing options. The cornerstone of this enterprise is Baby’s First Test, which houses the nation’s newborn screening educational center for parents and health providers.

Population(s) Served

PEER is a unique, award-winning technology solution that empowers communities and organizations to build registries and design studies quickly and efficiently to do the research their community cares about. Individuals, families, and communities contribute their health data to accelerate participant-driven research opportunities that address their unique health needs.

Your community. Your questions. Your insights.

You have questions - and we’re here to help you discover answers! PEER provides you with support, guidance, and infrastructure to do the research your community cares about.

All while putting people first.

We believe in building products and services from the ground up. People and their needs are part of our process every step of the way.

Population(s) Served

Research Bootcamp program offers advocates, advocacy organizations, and other community groups the information, strategies, and support needed to manage a research program and is currently seeking funding to support its ongoing mission to empower and enable community-led research. We provide various tools and resources to support communities in doing the research that matters most to their members, including the Genetic Alliance BioBank, the Genetic Alliance IRB, and our registry program, the Promise for Engaging Everyone Responsibly (PEER). Research Bootcamp takes this work further, providing communities with training to use these tools. Participants can engage at two levels: at an introductory level through the Research Bootcamp and in a series of focused workshops that provide participants with the opportunity to take their knowledge deeper in a community container facilitated by Genetic Alliance.

Population(s) Served

Where we work

Awards

Paul G. Rogers Distinguished Organization Advocacy Award 2011

Research!America

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 hours of training

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

Training and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These are the number of advocates participating in our online training

Number of members from priority population attending training

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

Training and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of programs documented

This metric is no longer tracked.
Totals By Year
Type of Metric

Other - describing something else

Direction of Success

Decreasing

Context Notes

This reflects our focusing on what has the greatest impact through the pandemic.

Number of consulting projects completed

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

Research Services

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Consulting was new to us in 2021.

Number of online groups served

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

Disease InfoSearch

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Total number of classes offered

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

Training and Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

These training just began in 2020.

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.

At a high level: we strive to find the places in the biomedical research and services system can be transformed in the short and long term to meet the needs of those who suffer.

Long term we look toward where “the puck will be” and create tools that will be useful when we arrive in a place of consumer engagement and involvement like we see in other industries. We are not there yet. However, we have proof that creating these tools ahead of the need will allow the flourishing we need. For example, we created a cross-disease registry, biobank, and ethics review board in 2003. Now they flourish as more communities drive their own research.

Short term we have several concrete and practical programs that will give communities (geographic, religious, Facebook, and advocacy organizations of all kinds) the tools they need to unleash the power and capacity they rightfully own. This is not about enabling or empowering – these communities own this right, and so it is simply aiding them in releasing the power and capacity.
In 2022, we will undertake the following activities. These expand and better integrate our existing tools for enhancing the training and capacity of the advocacy organizations under our umbrella.

We will convene a group of stakeholder experts to guide these activities as they evolve.

Some of this activity is better to integrate these tools into the iHope Genetic Health program to be accessible to the individuals participating in iHope. We will emphasize accelerating availability to individuals, families, and communities in low to middle-income areas.

Activity 1: Design a scalable approach to training and supporting organizations interested in accelerating research.
We will design a scalable model for providing training and support to the broader community of advocacy organizations. To do this, we will use all feedback collected to date, including barriers, challenges, and successes from their experiences. This will include developing a business model to ensure the sustainability of offering these tools and trainings to communities and updating them over time as more groups use the tools. One crucial training is our Bootcamp. A syllabus is available.

Activity 2: Establish a community of participants and advocates that can be activated for future research opportunities
Genetic Alliance is frequently asked to help study sponsors and researchers identify activated patients, caregivers, and other advocates to participate in projects. Each time, we go through a series of steps to identify the appropriate individuals. This organic need has led to fostering and cultivating long-term relationships with our existing network of experts so that the experience is not one-off or transactional. Study sponsors and organizations looking to identify participant leaders can tap into this resource and make it easier to quickly identify individuals based on various factors, including expertise, disease, condition area, etc. In this activity, we would s

Activity 1: Design a scalable approach to training and supporting organizations interested in accelerating research.
We will design a scalable model for providing training and support to the broader community of advocacy organizations. To do this, we will use all feedback collected to date, including barriers, challenges, and successes from their experiences. This will include developing a business model to ensure the sustainability of offering these tools and trainings to communities and updating them over time as more groups use the tools. One crucial training is our Bootcamp. A syllabus is available.

Activity 2: Establish a community of participants and advocates that can be activated for future research opportunities
Genetic Alliance is frequently asked to help study sponsors and researchers identify activated patients, caregivers, and other advocates to participate in projects. Each time, we go through a series of steps to identify the appropriate individuals. This organic need has led to fostering and cultivating long-term relationships with our existing network of experts so that the experience is not one-off or transactional. Study sponsors and organizations looking to identify participant leaders can tap into this resource and make it easier to quickly identify individuals based on various factors, including expertise, disease, condition area, etc. In this activity, we would scale our methods available to all communities.

Activity 3: Rebuild Disease InfoSearch on an extensive flexible cloud server
Currently, Disease InfoSearch is built on a Yii Framework. This is now a downgraded technology. We will rebuild DIS so that it will be current for the next ten years. We have finished the scoping for this and will begin in June 2022.

Activity 4: Build GaugeRx
Justification for building this tool
Every week investigators from academia, biotech, and pharma companies contact Genetic Alliance to ask what disease/condition/phenotype might be ready for their attention. They ask for suggestions based on readiness in one or more of four domains: Biology, Translational Research, Clinical, and Market Opportunity.

Genetic Alliance is a 501 (c) (3) that engages individuals, families, and communities to transform health. For more than three decades, we have empowered advocacy organizations and other communities to collaborate with clinical, policy, service, research, and other health institutions at the international, national, state, and local levels. Genetic Alliance has earned the trust of diverse stakeholders. As such, our convening of, and activities with, multidisciplinary entities result in novel, relevant, and effective solutions. Genetic Alliance builds and liberates capacity in networks, thus enabling each entity to leverage the others' learnings, resources, and tools.

Genetic Alliance, founded in 1986, has a long history of developing many aspects of this new program iGH. Over these years, it has been the home for thousands of communities, mostly advocacy organizations. It is the only umbrella nonprofit dedicated to equitable access to genetic and genomic technologies globally. Its reach is global, especially evident in its role in co-founding the International Rare Disease Research Consortium, Global Alliance for Genomes and Health, the Roundtable on Genomics and Precision Medicine of the National Academies of Medicine, and many other efforts. The Genetic Alliance CEO and others hold leadership positions in many global and national efforts, including the National Institutes of Health, the Health Resources and Services Administration, the Food and Drug Administration, the National Academies of Science Engineering Medicine, and many more. Genetic Alliance led the Coalition for Genetic Fairness, the 500 organizations that worked to get the Genetic Information Nondiscrimination Act passed. Since 2003 Genetic Alliance has managed and operated a cross-condition registry system, using technology from LunaPBC; a biobank using services from Precision for Medicine; and its own Institutional Review Board, overseen by the Office of Human Research Protections. These entities have collaborations in North and South America, Europe, Africa, Asia, and Australia. Genetic Alliance has founded and guided Genetic Alliance in Brazil, Australia, China, and the UK. Genetic Alliance has been awarded and managed more than $32M in grants and contracts during these years.

All of the programs we describe have been successfully used by more than 1000 communities.

We have detailed project plans, laid out in Atlassian products and the staff to manage them.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients, families, communities, advocacy and community leaders, researchers, clinicians, and policy makers.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Participants in a training, called Research Bootcamp, responded to surveys and focus groups asking for more modular learning. We created a website for asynchronous learning to complement or stand alone from the online training. We have gone on to frame a series of worksheets to provide more flexibility in the pace at which participants do the assigned work.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    In a fundamental way, we have radically revamped how we serve. It is not our purview to "invite people to the table", or empower, or enable them. They have the power, it is their table. We instead provide tools, mechanics

  • Which of the following feedback practices does your organization routinely carry out?

  • What challenges does the organization face when collecting feedback?

Financials

GENETIC ALLIANCE INC
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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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Connect with nonprofit leaders

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Build 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.

GENETIC ALLIANCE INC

Board of directors
as of 07/29/2022
SOURCE: Self-reported by organization
Board chair

Sharon Terry

Genetic Alliance

Kemp Battle

Battle Strategic Planning Associates

Natasha Bonhomme

Expecting Health

Sharon Terry

Genetic Alliance & PXE International

Kelly Edwards

Room One

Shantanu Gaur

Allurion Technologies

Usama Malik

Humanly Advisors

Ryan Taft

Illumina

Julia Ortega

C2N Diagnostics

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 ? 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? Yes

Organizational demographics

SOURCE: Self-reported; last updated 7/29/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Sexual orientation
Heterosexual or Straight

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

No data

Equity strategies

Last updated: 06/25/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We ask team members to identify racial disparities in their programs and / or portfolios.
  • We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
  • We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
  • We disaggregate data by demographics, including race, in every policy and program measured.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We use a vetting process to identify vendors and partners that share our commitment to race equity.
  • We have a promotion process that anticipates and mitigates implicit and explicit biases about people of color serving in leadership positions.
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.