FRIENDS OF PATIENTS AT THE NIH

aka Friends at NIH   |   Bethesda, MD   |  www.FriendsatNIH.org

Mission

Friends of Patients at the NIH, formerly Friends of the Clinical Center, provides financial, logistical and social support to patients while they are receiving groundbreaking and life-saving treatments at the NIH Clinical Research Center. We cover unmet needs so that patients can focus on recovery, healing and fulfilling their crucial role partnering with NIH researchers in advancing knowledge, discoveries and breakthroughs.

Ruling year info

1986

CEO

Ms. Heidi S Grolig

Main address

P.O. Box 34139

Bethesda, MD 20827 USA

Show more contact info

Formerly known as

Friends of the Clinical Center

EIN

52-1449492

NTEE code info

Fund Raising and/or Fund Distribution (E12)

Hospital (Specialty) (E24)

Public Health Program (E70)

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

Friends of Patients at the NIH was founded over 30 years ago by NIH employees responding to a crucial financial need they saw not being met. Patients from all walks of life were coming to NIH for clinical trials but some could not afford the costs to stay and receive care. Patients and family members were sleeping on the hospital’s floors or in their cars because they didn’t have the funds to pay for lodging while they were taking part in clinical trials. Many of these patients couldn't pay their bills and had to drop out, being forced to walk away from life-changing treatments simply because they couldn’t afford the price of a hotel. NIH employees came together to assist in alleviating that burden by raising funds to provide this much needed assistance. Friends at NIH has continued to deliver that same support by helping thousands of patients remain in treatment.

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?

Friends of Patients at the NIH

Friends of Patients at the NIH, formerly Friends of the Clinical Center, provides
financial, logistical and social support to patients while they are receiving
groundbreaking and life-saving treatments at the NIH Clinical Research
Center. We cover unmet needs so that patients can focus on recovery, healing
and fulfilling their crucial role partnering with NIH researchers in advancing
knowledge, discoveries and breakthroughs.
www.FriendsatNIH.org
Please visit our website for more information.

Population(s) Served

Receiving care and taking part in NIH clinical trials requires most of our patients to travel across the country or even around the world. The Patient Lodging program offers patients and their caregivers a free place to stay close to the NIH campus during those times where the cost is not covered by the clinical trial or assists with the cost of lodging back in their home state or country when the cost of seeking treatment has depleted their funds.

Population(s) Served

Friends of Patients at the NIH covers travel costs for family and caregivers to come back and forth to the NIH for treatment.

Population(s) Served

Friends of Patients at the NIH has covered medical insurance payments and the purchase of medical equipment when the clinical trial does not cover those expenses.

Population(s) Served

Quality of life support means such things as meals or events for those patients at the NIH during their trials to relieve some of the pressure and stress from the treatments. This provides patients with enjoyable time spent with family, friends and caregivers.

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 patients, caregivers and family members that participated in social activites and outings

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

Quality of Life Support

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Number of nights patients, caregivers and family members were supported free-of-charge with lodging

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

Patient Lodging Program

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.

Friends jumps in when a patient is weighing whether to drop out of a clinical trial at the NIH due to unanticipated or overwhelming financial or housing needs.

We provide a variety of direct patient support, including:

• lodging in apartments and hotels located immediately adjacent to the NIH campus for patients and families in need of local housing during treatment,
• rent, mortgage payments, and utility payments back home when cash flow is tight or non-existent or the caregiver has had to leave his/her job,
• medical devices like hearing aids when they are not covered by the clinical trial, and
• travel expenses for visits by caregivers and family, both domestic and international.

Helping with direct expenses has been the long-standing hallmark of Friends at NIH. By removing financial anxiety, Friends knows that patients are better able to be full clinical trial participants and concentrate on their treatment and the journey ahead.

In addition, Friends has expanded our services to include social and community activities. We offer: monthly patient events, Sunday dinners for newly arrived patients, art therapy programming for patients in isolation, and special outings for patients and caregivers to have much-needed breaks from treatment. Patients tell us all the time that these special outings and events are critical to their family’s mental health and well-being. Our Patient Lodging Program makes up nearly 65% of the program services provided to families.

Friends is one of the only three charities housed on the National Institutes of Health campus. We partner with physicians and medical teams to support patients in completing treatment studies and clinical trials. We work with patients and their medical team to help the patients and their families eliminate financial burdens and allow them to focus on healing. We are working on expanding awareness of our organization, increasing our outreach to local stakeholders and growing the number of patients and caregivers we serve.

We work hand-in-hand with NIH social workers to identify those patients in greatest need of support. Because the social workers at NIH work directly with the patients and their family members they are well situated to determine who among Clinical Center patients need (and qualify for) emergency financial assistance from Friends at NIH. Each social worker evaluates the specific circumstances of the patient and the patient’s family on a case-by-case basis, and determines if the filing of an application with Friends at NIH for financial or other aid would be appropriate.

If the social worker determines that such aid might be warranted, the social worker l helps the patient complete our application form. The social worker then files the application with us on behalf of the patient.
Next, our board of directors--several of whom are former or current NIH patients themselves--meet to weigh each request against our own capacity. With our goal of assisting as many patients as possible, our board looks at the number of requests, our availability of lodging, and the amount of funding necessary to complete the request.

If the application is approved, the social worker will deliver a check (or checks) to the patient drawn by the Friends at NIH to the order of the appropriate third party (or third parties) to pay airfare, medical expenses, rent or mortgage.

Over the years, Friends at NIH has given close to two million dollars in funding to help with needs such as rent, mortgages, utilities back home, transportation of caregivers and bone marrow donors, local housing for patients and their families, or other unmet needs.

In doing so, Friends at NIH not only assists patients with treatment but also NIH researchers in advancing knowledge, discoveries and breakthroughs, fulfilling a crucial role in helping millions of future patients who benefit from the discoveries made during the clinical trials.

Financials

FRIENDS OF PATIENTS AT THE NIH
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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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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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FRIENDS OF PATIENTS AT THE NIH

Board of directors
as of 11/2/2020
SOURCE: Self-reported by organization
Board chair

Dr. Roger Longenderfer

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 ? Yes
  • 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 10/29/2020

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, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

No data

 

No data

Sexual orientation

No data

Disability

No data