NATIONAL NEUTROPENIA NETWORK INC

awareness, education, research, and support

Buffalo, MN   |  neutropenianet.org

Mission

The National Neutropenia Network is dedicated to improving the lives of individuals with severe chronic neutropenia through awareness, education, patient support and research. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Ø  Toincrease general public awareness.
 
 
 
Ø  Topromote research related to neutropenia.

Ruling year info

1995

Principal Officer

Kate Bottiger

Main address

PO Box 632

Buffalo, MN 55313 USA

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EIN

38-3207136

NTEE code info

Specifically Named Diseases (G80)

Specifically Named Diseases (G80)

IRS filing requirement

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

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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?

Peer Support

We designed this program so that people facing neutropenia can support each other. This program will provide you the opportunity to speak with a person who has lived with neutropenia in a variety of settings.

Population(s) Served
Chronically ill people

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 clients participating in support groups

This metric is no longer tracked.
Totals By Year
Population(s) Served

Chronically ill people

Related Program

Peer Support

Type of Metric

Input - describing resources we use

Direction of Success

Holding steady

Number of academic scholarships awarded

This metric is no longer tracked.
Totals By Year
Population(s) Served

Students

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

We plan to implement this program in 2022

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.

The mission of the National Neutropenia Network is to promote awareness, education, and research, and to provide a support system for patients with severe chronic neutropenia (SCN) and their families through a national resource network.

Develop Support Groups or Listening Sessions  and meet quarterly
Create a scholarship program for med students to encourage interest in Hematology/Oncology/Immunology
Alliance Partner Organization with PAN Foundation 
Create an 'Awareness Event Kit" for students/individuals
Broaden Educational content on our website, including benign neutropenia 

We have created a Medical Advisory Board to help us create a scholarship program for med students
We have partnered with a pharmaceutical company who will assist us with our educational content; and it can be approved and finalized by the physicians we work with.
A group of active volunteers will be assisting in creating an "Awareness Kit" regarding Neutropenia.

We have a patient support and peer support programs to support those newly diagnosed with neutropenia.
Our Junior and Senior Ambassadors are raising awareness about neutropenia throughout their communities.
We have partnered with pharmaceutical company to encourage genetic testing and clinical trials in hopes of a cure.

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?

    We support children and adults with chronic neutropenia and their loved ones.

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

    Electronic surveys (by email, tablet, etc.), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • 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?

    We have revamped our website to include information regarding clinical trials as well as add a FAQ page.

  • With whom is the organization sharing feedback?

    The people we serve, Our board,

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

    Strengthen relationships with the people we support.

  • 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 look for patterns in feedback based on people’s interactions with us (e.g., site, frequency of service, etc.), We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback, Staff find it hard to prioritize feedback collection and review due to lack of time,

Financials

NATIONAL NEUTROPENIA NETWORK 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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  • 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.

NATIONAL NEUTROPENIA NETWORK INC

Board of directors
as of 3/6/2022
SOURCE: Self-reported by organization
Board chair

Gretchen Long

Westfield

Term: 2020 -

Tammy Loader

Muskingum Valley Health Center

Robert McGuinness

Kite Realty Group

Tanya Lakhia

Vanessa Ploederl

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? Not applicable
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 03/06/2022

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

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.