HISTIOCYTOSIS ASSOCIATION INC

A Rare Community

aka Histiocytosis Association   |   Pitman, NJ   |  www.histio.org

Mission

The Histiocytosis Association is dedicated to raising awareness about histiocytic disorders, providing educational and emotional support, and funding research leading to better treatments and a cure.

Ruling year info

1988

Executive Director

Ms Deanna Fournier

Main address

332 North Broadway

Pitman, NJ 08071 USA

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Formerly known as

Histiocytosis Association of America

EIN

22-2827069

NTEE code info

Cancer (G30)

Human Service Organizations (P20)

Fund Raising and/or Fund Distribution (G12)

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

The histiocytoses are a group of rare disorders that affect young children and adults. Recently classified as a "rare cancer" these diseases can cause long term debilitating problems in patients. Some patients do not survive. Because these diseases are rare the Association is working to fund research into better treatments and a cure. While seeking better treatments and a cure the Association the Association provides education and support to patients and families to help them cope with the effects of these diseases.

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?

Histiocytosis Association Research Program

The Histiocytosis Association Research Program provides funding for two types of scientific research – basic and clinical. Basic scientific research focuses on understanding the function of cells and the disease process, and is generally conducted in a laboratory under controlled settings. Clinical scientific research utilizes the knowledge generated through basic research and applies it directly to the treatment of patients through clinical trials. These two forms of research complement one another, and both are necessary in the quest for better treatments and, ultimately, a cure for histiocytic disorders.

The Histiocytosis Association is committed and focused on a threefold research plan and philosophy:
1. The Association funds the very best basic science research being conducted worldwide. It is identified through a competitive, peer-review process modeled after that of the National Institutes of Health; the results of this funding continue to pave the path to a cure.
2. The Association funds clinical studies that result in identifying the best possible treatments for histiocytic disorders. This provides immediate aid to patients battling these diseases.
3. The Association directly facilitates research by managing the only professional medical organization specifically dedicated to the research and treatment of histiocytic disorders, the Histiocyte Society. This unique relationship provides the Histiocytosis Association with unparalleled access to the latest advancements and information in the histio scientific community, from which all histio patients can benefit.

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

Part of the mission of the Histiocytosis Association (the Association) is to identify and address the need of histiocytosis patients and their families. In doing so, the Association engages in a number of efforts to assist the Histio Community in dealing with the unique circumstances of having a rare disease.

Information available regarding histiocytosis, its diagnosis and treatment is very scarce. When individuals contact the Association for the first time, whether it is by phone or through the website, they are provided with an Educational Resource Package that guides them through the stages of getting to know the disorder. The package is customized according to a patient’s specific histiocytic disorder diagnosis to provide the maximum amount of appropriate information available.

Patients with histiocytic disorders and their families often feel very alone and hopeless as they face the devastating effects of histiocytic disorders. The rarity of histiocytic disorders also makes it difficult for patients and families to have the opportunity to meet and share with others who understand what they are going through. To help alleviate the pain of feeling isolated, the Association hosts in-person Patient and Family Educational Meetings throughout the United States and reaches the global community virtually, through live and recorded webinars.

Educational meetings offer the opportunity to learn the latest information about histiocytic disorders through a presentation from experts and to connect with other patients and families in their region. The informal atmosphere invites the sharing of personal experiences and the offering of emotional comfort and moral support. Medical experts in the field of histiocytosis speak at the meetings and share the latest research findings and treatments. A question-answer period follows the presentations and provides patients and families the opportunity to ask whatever questions they have in relation to the disease.

Because histiocytosis is so rare, it is often difficult to impossible to locate others diagnosed with the same disease. One of the only ways to do this is via the Internet. In order to provide a means of linking patients together, the Association created its website back in 1996, making it one of the first nonprofit organizations to host an online center for its community. Activity on the site grew rapidly, especially in the message board area, where patients and families could connect directly with others engaged in the same daily struggles of coping and managing a rare disease. The Association website features extensive educational materials and references, a Physicians Directory searchable by geographic location and specific histiocytic disorder, volunteer opportunities, a Frequently Asked Questions section, and many other powerful resources.

Histiocytic disorders affect less than 200,000 children and adults in the United States each year. As such, histiocytic disorders are not widely known or understood by the general public, or even within the medical community. Patients often find themselves searching for a knowledgeable physician, one that knows more about the disease than they do as a patient. To assist patients and their caregivers in identifying essential resources, the Histiocytosis Association has established a database of physicians with specific experience in the treatment of histiocytic disorders.

The Histio Physician Directory provides patients with the opportunity to locate a physician in their area that has experience treating histiocytic disorders. All physicians included in the Directory have expressly agreed to have their name shared with patients seeking medical attention through the Histiocytosis Association.  Patients and/or their caregivers can search the Directory for knowledgeable doctors within 300 miles of their selected location in the US and worldwide. 

Each year, more than 850 people contact the Histiocytosis Association for the first time; nearly half of those new contacts utilize the service of the Directory.

Population(s) Served
Families
Adults
Children and youth

Each year, dedicated Association volunteers organize special events throughout the United States to raise funds and awareness for histiocytic disorders. By hosting events in their communities, volunteers help educate their friends, family, colleagues and neighbors which makes a huge impact on research, awareness, education, and the fight for better treatments and cure.

Organizing these events not only raises funds to support Association programs, it provides Association members with an incredible feeling of empowerment. Through distributing educational materials and having Association representatives in attendance, these events spread the word about histiocytosis to entire communities while educating the public about the various programs of the Association.

Population(s) Served
Families
Adults
Children and youth
Caregivers
Parents

The principal goal of the volunteer program is to recruit, retain and recognize highly valuable volunteers by providing them with meaningful work assignments.   Participating volunteers contribute to the Association’s success by providing the talents and resources that become available through a formalized volunteer program. Association volunteers perform important tasks and receive recognition for their contributions in a variety of forms. The volunteer program benefits the Association’s members by enhancing the its ability to fund scientific research that results in advancements in medical treatment.  In addition, the program enables the Association to offer patients and family members opportunities to become involved in the organization’s work.

A well-structured, high-quality volunteer program can be extremely beneficial to any organization, as volunteers often possess various talents, skills, and abilities that an organization otherwise would not have at its disposal. Although volunteers offer their skills for free, volunteers are not free. It is the philosophy of the Association that volunteer programs thrive when volunteers are provided with clearly stated goals and expectations, properly trained and supported in their work, acknowledged for their contributions, and recognized appropriately. When a volunteer program incorporates these elements, staff and volunteers can then work together effectively to achieve an organization’s mission.

 

It is in the best interest of non-profit, charitable institution, such as the Association, to manage formal volunteer program. The presence of a formalized program demonstrates that an organization understands the importance of, and has proper respect for, a volunteer’s time and efforts. As the Association’s volunteer program operates based upon a clear set of guidelines and expectations, which are communicated to volunteers during their initial interview and orientation. Because volunteers’ roles are well defined before their service to the organization begins, they are assured (I don’t know about this phrase) that their experience of working on behalf of the Association will be as rewarding as possible. For the aforementioned reasons, the Association’s formalized volunteer program was officially launched on April 20, 2009. Since its inception the program t has recruited, and maintained, 36 active volunteers at the time of this writing.

 

As noted above, the histiocytic disorders are rare. As a result, histiocytosis patients - and therefore Association members – are scattered throughout the United States. A smaller number of members live in different countries around the world. Almost all Association volunteers were members of the organization prior to beginning their service; consequently the majority of them are located in different areas across the country, while a few live outside of the United States.

The volunteer program aims to address needs that are identified through feedback from the Association’s members. No one knows what these are better than members themselves.  Therefore, the organization feels that recruiting its members to serve as volunteers is the most productive way to maximize its resources.  Once these needs are recognized, the Association then draws upon its volunteer resources to complement its staff-led efforts in those areas. The organization’s volunteers improve the lives of its members by creating and managing support groups and networks, raising awareness among physicians so that earlier diagnoses can be made, and participating in many other important activities. By operating a formalized volunteer program built upon the central tenets of recruitment, training and retention, and recognition, the Association makes it possible for its volunteers to contribute in vital ways to the health and wellbeing of its members.

Population(s) Served
Caregivers
Adults
Parents

Where we work

Awards

Four-Star Charity 2011

Charity Navigator

Four-Star Charity 2010

Charity Navigator

Four-Star Charity 2020

Charity Navigator

Four-Star Charity 2019

Charity Navigator

Affiliations & memberships

National Organization of Rare Disorders 2020

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 Facebook followers

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

Families

Related Program

Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

The number of FaceBook followers has steadily trended higher. Through this channel we offer Physician webinars for families and patients, resources to help families and patients.

Total dollars received in contributions

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

Adults, Children and youth, Health

Related Program

Fundraising & Special Events

Type of Metric

Other - describing something else

Direction of Success

Holding steady

Context Notes

Drop in 2018 due to loss of one major fundraising event. 2020 contributions impacted by COVID-19.

Total number of grants awarded

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

Adults, Children and youth, Health

Related Program

Histiocytosis Association Research Program

Type of Metric

Context - describing the issue we work on

Direction of Success

Increasing

Context Notes

Research projects seeking better & curative treatments; average $50k/ea. Not shown: $70k/yr support of scientific efforts of the Histiocyte Society. 2020 funds will be allocated to 2021 grant cycle.

Number of unique website visitors

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

Adults, Children and youth, Health

Related Program

Outreach

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Providing education, support and resources about histiocytic disorders and coping with the effects to patients, families, friends and general public. COVID likely drew traffic away from www.histio.org

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 Histiocytosis Association is a global nonprofit organization dedicated to addressing the unique needs of patients and families dealing with the effects of histiocytic disorders while leading the search for a cure. It is the only organization of its kind, connecting the patient and medical communities to:

Grow and share knowledge of histiocytic disorders,
Provide critical emotional and educational support to patients and families, and
Identify and fund key research initiatives that will lead to a world free of histiocytic disorders.

The Histiocytosis Association is committed to and focused on a threefold research plan and philosophy:
• The Association funds the very best basic science research being conducted worldwide. It is identified through a competitive peer-review process modeled after that of the National Institutes of Health; the results of this funding continue to pave the path to a cure.
• The Association funds clinical studies that result in identifying the best possible treatments for histiocytic disorders. This provides immediate aid to patients battling these diseases.
• The Association directly facilitates research by managing the Histiocyte Society, the only professional medical organization specifically dedicated to the research and treatment of histiocytic disorders. This unique relationship provides the Histiocytosis Association with unparalleled access to the latest advancements and information in the histiocytosis scientific community, from which all patients can benefit.
The Association is particularly proud of its partnership with the Histiocyte Society – a professional medical association comprised of more than 200 physicians and scientists from around the world. Members of the Society are committed to advancing knowledge and improving outcomes for patients with histiocytic disorders through the planning, development, sponsorship and oversight of clinical research. For more than 25 years the Histiocytosis Association has served as a partner, administrator and the primary source of funding for the Histiocyte Society. The Society's Scientific Committee is integrally involved in the Association's Research Program, conducting an intensive review of applications received during the annual funding cycle and sharing its recommendations with the Association's Board of Trustees. While the search for more effective treatments and, ultimately, a cure continues, the Histiocytosis Association is dedicated to informing and empowering those who live with histiocytic diseases every day. The Association profoundly understands the needs of the histiocytosis community and has become a trusted source for patients – and physicians – to find reliable answers. Through the sharing of essential information and the constant presence of a compassionate peer network, the Histiocytosis Association serves as a safe haven for patients and families fighting histiocytic disorders. Outreach and educational initiatives for patients and families include:
• Educational materials and resources
• Local Circle of Friends support groups
• Advocacy and awareness activities
• eNewsletter and eBlast communications
• An online virtual community for histiocytosis patients and families
• Educational conferences and online video presentations
• A directory of physicians experienced in treating histiocytic disorders
• The opportunity to join our coalition of volunteers and give back to the community
• The Histio Warriors Directory connecting patients and families worldwide

The Histiocytosis Association has continued to grow in sustaining membership, programs and knowledge. What began as a kitchen table operation is now a global organization with approximately 7,000 members. It is the central hub for information and support, a bridge between the medical and patient communities, and the largest financial supporter of research into histiocytic disorders in the world.

The Histiocytosis Association is supported entirely through gifts from corporations, foundations and individual donors to fund its education and support programs, and its critical research program. This research has led to significant breakthroughs, including the identification of the various different forms of the disease, and the introduction of revolutionary protocols to treat patients with Langerhans cell histiocytosis and hemophagocytic lymphohistiocytosis. Research continues into pinpointing the cause of these mysterious diseases, the development of more effective treatments, and ultimately, the discovery of a cure.

We have funded research that led to better treatments for Hemophagocytic Lymphohistiocytosis increasing the survival rate from 0 to 60%. We funded the discovery of the BRAF mutation that causes this disease in patients with Langerhans cell histiocytosis and are now funding clinical trials focused on targeted treatments. Helping the Histio Community through Research, Education and Outreach

Each year the Histiocytosis Association aims to help those within the histiocytosis community by providing much needed education while funding the path to a cure. In 2016 we accomplished this by:

Funding $300,000 in pioneering research to advance the knowledge of histiocytosis, lead to better treatments, and, ultimately, find a cure.
Investing in the “business of science" by acting as the administrative home for the world-renown professional medical organization the Histiocyte Society, bringing the medical and patient communities together (258 members from 38 countries).
Promoting new and emerging treatments through sponsorship of clinical trials and studies.
Providing ongoing funding for the LCH-IV international clinical study database in Vienna, Austria.
Developing the Histiocytosis Association's Medical and Scientific Advisory Committee (MSAC).
Sponsoring and organizing the Annual Meeting of the Histiocyte Society – the only scientific forum that focuses solely on histiocytosis – where more than 180 physicians and researchers gather to share knowledge.
Conducting a rigorous scientific review process to identify and then fund only the best research being done around the world.
Exceeding $6.3 million in total research funded through the Association grant program, enabling research projects that are resulting in fewer patient fatalities and more effective treatments.
Maintaining current information on over 300 physicians in the Histio Physician Directory that provides patients and families with access to experienced clinicians, which can result in better outcomes for patients.
Providing a centralized and current source of information and resources to more than 200,000 unique visitors via the Association's web-based community – www.histio.org.
Distributing educational information to more than 900 newly diagnosed patients and families.
Providing resources and information to more than 18,000 physicians, patients, families and friends since the organization began in 1986.
Distributing a 15-part series of expert-led educational videos to deliver vital information in multiple formats.
Collaborating with numerous histiocytosis organizations around the world, including the Nikolas Symposium, to extend the reach of resources, education and research and to bring the world of histiocytosis closer together.
Providing multiple communication avenues to patients and families, including social media outlets such as Facebook, Twitter, and Pinterest, to keep them well-informed and engaged.

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 demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients, family members, caregivers, physicians, and other healthcare professionals who are impacted by or treat histiocytosis / histiocytic disorders and related conditions.

  • 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),

  • 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,

  • What significant change resulted from feedback?

    Although the founder of the Association is well respected feedback led to the conclusion that a new, vibrant leader would benefit the Association. As a result, after an exhaustive search a new Executive Director was hired.

  • With whom is the organization sharing feedback?

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

  • 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 take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, 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?

    We don't have any major challenges to collecting feedback,

Financials

HISTIOCYTOSIS ASSOCIATION INC
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Operations

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

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HISTIOCYTOSIS ASSOCIATION INC

Board of directors
as of 4/6/2021
SOURCE: Self-reported by organization
Board chair

Mrs. Tracy Brown

Noblis, Inc.

Term: 2021 - 2024

Stephan Ladisch

Children's National Medical Center

Christine Shipley

Southern California grocery company

Kimo Stine

University of Arkansas for Medical Sciences

Robert List

Saudi Petroleum International, Inc

Tracy Brown

Noblis, Inc.

Brad Comp

Ayco, a Goldman Sachs Company

Chad Rubin

Trout Group and Trout Capital

James Hassan

Musick, Peeler & Garrett LLP

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 3/20/2021,

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
Disability status
Person without a disability

Race & ethnicity

No data

Gender identity

 

Sexual orientation

No data

Disability

No data

Equity strategies

Last updated: 03/20/2021

Policies and practices developed in partnership with Equity in the Center, a project that works to shift mindsets, practices, and systems within the social sector to increase racial equity. Learn more

Data
  • We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
Policies and processes
  • 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.