PLATINUM2023

CHROMOSOME DISORDER OUTREACH INC

You Are Not Alone

Boca Raton, FL   |  www.chromodisorder.org
GuideStar Charity Check

CHROMOSOME DISORDER OUTREACH INC

EIN: 52-1774908


Mission

To provide information and support to individuals and families affected in any way by a rare chromosome or gene mutation disorder diagnosis. Rare chromosome and gene mutation disorders affect a significant portion of the population. It is estimated that chromosome disorders alone affect up to 1 in 140 persons worldwide. Despite their prevalence, these disorders often receive limited attention and funding compared to more common conditions. CDO seeks to address this disparity by raising awareness, supporting affected individuals and their families, and fostering research initiatives aimed at advancing rare chromosome and gene mutation disorder treatment and diagnosis.

Ruling year info

1994

Principal Officer

Linda Sorg

Co Principal Officer

Darlene Axelsson

Main address

PO Box 724

Boca Raton, FL 33429 USA

Show more contact info

Formerly known as

Chromosome Deletion Outreach, Inc.

EIN

52-1774908

Subject area info

Education

Nonprofits

Genetics

Pediatrics

Diseases and conditions

Population served info

Children and youth

Adults

Families

People with disabilities

NTEE code info

Birth Defects (G20)

Alliance/Advocacy Organizations (Y01)

Alliance/Advocacy Organizations (W01)

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Rare chromosome and gene mutation disorders affect a significant portion of the population. It is estimated that chromosome disorders alone affect up to 1 in 140 persons worldwide. Despite their prevalence, these disorders often receive limited attention and funding compared to more common conditions. CDO seeks to address this disparity by raising awareness, supporting affected individuals and their families, and fostering research initiatives aimed at advancing rare chromosome and gene mutation disorder treatment and diagnosis.

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?

Personalized Networking Services

Personalized matching of chromosome or gene mutation diagnosis, medical diagnosis and regional location.

Population(s) Served
Children and youth
People with disabilities
People with diseases and illnesses

Where we work

Affiliations & memberships

National Organization for Rare Disorders - member 1998

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 list subscribers

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

Output - describing our activities and reach

Direction of Success

Increasing

Number of Facebook followers

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

Output - describing our activities and reach

Direction of Success

Increasing

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.

Our goals encompass the following: To raise awareness, provide support and resources to affected individuals and their families through our personalized networking programs and social media platforms. To advocate for better medical research and treatments, and foster a sense of community among those impacted by these conditions. And further through our Ask the Doctor consulting programs work towards improving diagnosis and access to care, while collaborating with researchers, medical professionals, and policymakers in an effort to drive positive change.

1. **Raise Awareness:** Develop targeted awareness campaigns using social media, traditional media, and partnerships with influencers, medical professionals, and patient advocates to educate the public about the disorder's impact.

2. **Provide Support Services:** Offer genetic consulting services, educational resources, and helplines to assist patients, families, and caregivers in coping with the challenges of rare chromosome and gene mutation disorders.

3. **Advocacy and Policy Change:** Advocate for policy changes at local, regional, and national levels to improve research funding, access to treatments, insurance coverage, and inclusion of these rare disorders in public health agendas.

4. **Patient Registry:** patient registry established 25+ years ago which collects and shares information about patients, which can aid researchers, doctors, and patients in better understanding the rare disorder.

5. **Collaboration with Medical Professionals:** Work closely with medical professionals to enhance their understanding of the disorder and facilitate timely and accurate diagnoses.

6. **Community Building:** Organize events, workshops, and conferences to create a sense of community among patients, families, and caregivers, fostering a supportive network.

7. **Public and Private Funding:** Seek grants, donations, and sponsorships from foundations, corporations, and individuals who are passionate about rare disorders.

8. **Digital Engagement:** Utilize websites, social media, and online forums to connect patients, caregivers, and medical professionals, sharing information, resources, and experiences.

9. **Patient Education:** Develop educational materials to empower patients with knowledge about their condition, treatment options, and self-care.

10. **Global Collaboration:** Collaborate with international rare disorder organizations to share best practices, information, and resources.

1. **Expertise and Knowledge:** All CDO's board members are parents of children with rare chromosome disorders and as such possess a deep understanding of the challenges faced by affected individuals and their families. Our medical geneticists are experts in rare chromosome and gene mutation disorders and their medical aspects as well as the broader landscape of medical research and treatment options.

2. **Network and Partnerships:** We continually work to establish connections with medical professionals, researchers, patient advocates, and others to collaborate on research, treatments, and support initiatives.

3. **Resource Development:** CDO develops and disseminates educational materials, informational resources, and tools to empower patients, families, and caregivers with accurate information about rare chromosome and gene mutation disorders.

4. **Support Services:** CDO offers a range of support services, including a family helpline, personalized networking programs, genetic consulting services and online communities, all which provide emotional and informational support to individuals affected by these rare disorders.

5. **Awareness Campaigns:** CDO coordinates an annual awareness campaign using social media, events to raise public awareness about rare chromosome and gene mutation disorders impact and challenges.

6. **Patient Advocacy:** We actively advocate for patients' rights, ensuring access to proper medical care and treatment options.

7. **Crisis Response:** CDO is equipped to provide immediate support and resources during crisis situations, offering guidance and assistance to affected individuals and their families.

8. **Community Building:** CDO offers a sense of community among patients, caregivers, and medical professionals through our networking programs and online platforms.

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.
  • 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 strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals

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

    We collect feedback from the people we serve at least annually, We aim to collect feedback from as many people we serve as possible, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We share the feedback we received with the people we serve

  • What challenges does the organization face when collecting feedback?

    Staff find it hard to prioritize feedback collection and review due to lack of time

Financials

CHROMOSOME DISORDER OUTREACH INC
Fiscal year: Jan 01 - Dec 31

Revenue vs. expenses:  breakdown

SOURCE: IRS Form 990 info
NET GAIN/LOSS:    in 
Note: When component data are not available, the graph displays the total Revenue and/or Expense values.

Financial data

SOURCE: IRS Form 990

CHROMOSOME DISORDER OUTREACH INC

Revenue & expenses

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

CHROMOSOME DISORDER OUTREACH INC

Balance sheet

Fiscal Year: Jan 01 - Dec 31

SOURCE: IRS Form 990 info

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 ending: cloud_download Download Data

Operations

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

Documents
Form 1023/1024 is not available for this organization

Principal Officer

Linda Sorg

Co Principal Officer

Darlene Axelsson

CHROMOSOME DISORDER OUTREACH INC

Officers, directors, trustees, and key employees

SOURCE: IRS Form 990

Compensation
Other
Related
Show data for fiscal year
Compensation data
Download up to 5 most recent years of officer and director compensation data for this organization

There are no highest paid employees recorded for this organization.

CHROMOSOME DISORDER OUTREACH INC

Board of directors
as of 08/21/2023
SOURCE: Self-reported by organization
Board of directors data
Download the most recent year of board of directors data for this organization
Board co-chair

Linda Sorg

no affiliation


Board co-chair

Darlene Axelsson

Linda Sorg

no affiliation

Adreanna Tarwater

no affiliation

Darlene Axelsson

no affiliation

Heidi Lerner

no affiliation

Kelly Paulson

no affiliation

Kathy Wiens

no affiliation

Mary Jane Gutkowski

no affiliation

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? No
  • 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? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes