SILVER2023

Undiagnosed Diseases Network Foundation (UDNF)

Until rarity is not a barrier.

Washington, DC   |  https://www.udnf.org
GuideStar Charity Check

Undiagnosed Diseases Network Foundation (UDNF)

EIN: 87-3474254


Mission

Our mission is to improve access to diagnosis, research and care for all with undiagnosed and ultra-rare diseases.

Ruling year info

2023

CEO

Amy Gray

Main address

1012 14th St NW Ste 500

Washington, DC 20005 USA

Show more contact info

EIN

87-3474254

Subject area info

Diseases and conditions

Population served info

Children and youth

Adults

Ethnic and racial groups

Economically disadvantaged people

People with diseases and illnesses

NTEE code info

Fund Raising and/or Fund Distribution (G12)

IRS subsection

501(c)(3) Public Charity

IRS filing requirement

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

Tax forms

Show Forms 990

Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Mission Our mission is to improve access to diagnosis, research, and care for all individuals with undiagnosed and ultra-rare conditions. Vision Our vision is healthcare that embraces the unknown and pursues clinical and research solutions for patient well being.

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?

Patient Navigation Program

Undiagnosed and ultra-rare patients and families are paired with a navigator who can support them with managing medical care, accessing social services, applying to diagnostic programs, connecting to research opportunities, matching with therapeutic options, and building community. Navigators also facilitate consolidation of clinical, fundraising, community building, and symptom assessment strategies across undiagnosed and rare disease patient communities. Patients can receive this service at any point in their journey from symptom onset to diagnosis and beyond.

Population(s) Served
Adults
Children and youth
People with disabilities
Chronically ill people
Terminally ill people

Where we work

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

Overview
The UDNF aims to foster collaboration among patients, clinicians, and scientists to enhance the quality of life of undiagnosed and ultra-rare disease patients. We do this by mitigating barriers to equity and access in healthcare; setting standards for patient management; and bridging diagnosis and therapeutics as well as research and clinical care in undiagnosed patients and patients with ultra-rare diseases.

Led by and for patients and their families, the UDNF will become the central resource for the undiagnosed community. From when a patient first experiences unexplained symptoms to their 10-year anniversary of effective treatment, the UDNF will provide the resources, community, and research they need to live their best lives. No patient or family will have to traverse the unknown alone.

We envision a learning healthcare system where researchers, clinicians, and patients work together to advance individual and community well being. By leveraging advancements in science, technology, and service delivery, we aim to continuously improve health quality and efficiency for undiagnosed patients.

Growth & Sustainability:
1. Grow into a sustainable, high-impact nonprofit organization that collaborates with a network of clinical sites and research cores.

Community Outreach strategies:
1. Build a community by and for all patients with undiagnosed and ultra-rare diseases and their families.
2. Serve as the leading resource for trustworthy information about undiagnosed and ultra-rare diseases and services.
3. Ensure underrepresented patients have equitable access to diagnosis, therapeutics, research, and support.

Patient & Family Navigation strategies:
1. Improve medical management, care coordination, access to social services, community support, and mental health services for undiagnosed and ultra-rare patients and their families.
2. Improve the patient and family experience of the diagnostic process and transition to therapeutics, regardless of when or whether a diagnosis is achieved.
3. Use consolidated tools and strategies across undiagnosed and ultra-rare disease communities.

Patient-Centered Research & Clinical Care strategies:
1. Make the diagnosis of ultra-rare diseases more accessible, equitable, accurate, and efficient.
2. Advance diagnosis and knowledge of ultra-rare diseases.

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 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

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

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive, We share the feedback we received with the people we serve, We tell the people who gave us feedback how we acted on their feedback

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback

Financials

Undiagnosed Diseases Network Foundation (UDNF)
Fiscal year: Nov 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

Undiagnosed Diseases Network Foundation (UDNF)

Revenue & expenses

Fiscal Year: Nov 01 - Dec 31

SOURCE: IRS Form 990 info

Fiscal year ending: cloud_download Download Data

Undiagnosed Diseases Network Foundation (UDNF)

Balance sheet

Fiscal Year: Nov 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

CEO

Amy Gray

Undiagnosed Diseases Network Foundation (UDNF)

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.

This organization has no recorded board members.

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? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Not applicable