Histiocytosis Association
The Histiocytosis Association is a 501(c)(3) nonprofit founded in 1986 that supports patients and families affected by rare histiocytic disorders through a global physician directory (350+ specialists in 50+ countries), $7 million in cumulative research funding, peer support programs, and awareness merchandise sales.
- Company typePrivate
- Founded1986
- HeadquartersPitman, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Histiocytosis Association does
The Histiocytosis Association is a 501(c)(3) nonprofit organization founded in 1986 and headquartered in Pitman, New Jersey, that operates as the leading global nonprofit dedicated to histiocytic disorders — a group of rare diseases including Langerhans Cell Histiocytosis (LCH), Hemophagocytic Lymphohistiocytosis (HLH), Erdheim-Chester Disease (ECD), Juvenile Xanthogranuloma (JXG), and Rosai-Dorfman Disease. The Association's mission is to address the unique needs of patients and families affected by these disorders while leading the search for a cure. It serves three primary constituencies: patients and families seeking information and peer connection, healthcare professionals needing specialist referral pathways, and researchers pursuing funding for rare disease studies.
The Association's core "product" is a community and information platform rather than a technology product. It maintains a Physician Finder directory of 350+ physicians across 50+ countries, operates a BigCommerce-powered eStore (estore.histio.org) selling 30+ awareness merchandise SKUs, produces educational webinars and the 'Beyond The Diagnosis' podcast, hosts regional patient/family meetings, and runs an annual research grant funding cycle. Cumulative research funding totals $7 million since inception, contributing to outcomes such as FDA approval of Cobimetinib for adult histiocytosis. The Association has served 19,500+ physicians, patients, and families since 1986.
The revenue model is dual-stream: (1) donations and charitable contributions from individuals, families, and supporters through preset tiers ($35-$500) and custom amounts, plus annual fundraising campaigns including the current 'From Legacy to Future' 40th Anniversary campaign; and (2) eStore merchandise sales ranging from $2 awareness bracelets to $34 hoodies, with gift certificates in $10-$200 denominations. The organization operates with 1-10 employees and holds Charity Navigator Four Star, GuideStar Exchange, and NORD member credentials.
Histiocytosis Association firmographics
Firmographics- Name
- Histiocytosis Association
- Legal name
- Histiocytosis Association, Inc.
- Website
- https://histio.org
- Company type
- Private
- Founded year
- 1986
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- The Histiocytosis Association is a 501(c)(3) nonprofit founded in 1986 that supports patients and families affected by rare histiocytic disorders through a global physician directory (350+ specialists in 50+ countries), $7 million in cumulative research funding, peer support programs, and awareness merchandise sales.
- Ownership category
- akta.pro rank
Histiocytosis Association industry classification
Industry- Product category
- Rare Disease Patient Advocacy and Support
- NAICS
- Voluntary Health Organizations (813212), Individual and Family Services (6241)
- SIC
- Services-Misc Health & Allied Services, Nec (8090), Services-Social Services (8300)
- akta.pro primary industry
- Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)
Keywords
Where Histiocytosis Association is headquartered
LocationHeadquarters
- HQ city
- Pitman
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Histiocytosis Association business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Marketing or Sales, Technology or R&D, Others
Revenue model
- Donations and Charitable Contributions: The primary revenue stream comes from donations from individuals, families, and supporters affected by histiocytic disorders. The organization runs annual fundraising campaigns and various donation initiatives including the 40th anniversary campaign.
- eStore Merchandise Sales: The organization operates an e-commerce store selling awareness merchandise including apparel, accessories, educational materials, and gifts. All proceeds support the association's mission of funding research and providing resources to patients and families.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Other | Pay-as-you-go | Donation amounts |
Go-to-market motion1 record
Distribution channels4 records
Marketing channels7 records
Histiocytosis Association product offering
Product offeringCore offering
The Histiocytosis Association is a global 501(c)(3) nonprofit organization that funds research into histiocytic disorders and provides information, support, and connection resources to patients, families, and healthcare professionals. Its core offerings include research grant funding ($7 million cumulative to date), a global physician directory covering 350+ specialists in 50+ countries, peer-to-peer support chats, educational webinars, regional patient/family meetings, clinical trial information, and awareness merchandise sold through its Histio eStore to sustain operations.
Product overview
The Histiocytosis Association operates a unified eCommerce platform (Histio eStore powered by BigCommerce) that serves as the primary merchandise and fundraising channel for the nonprofit organization. The product portfolio consists of awareness merchandise and educational materials designed to raise funds for histiocytic disorder research while supporting patients and families. The core product is the Histio eStore itself, complemented by two main product lines: awareness merchandise (apparel, accessories, and awareness-specific items like bracelets, magnets, ribbons, and garden flags) and educational materials (school kits, coloring books, and awareness kits for various histiocytic disorders). Specialty event merchandise for the Histio Hike Shenandoah fundraising event includes commemorative t-shirts, performance wear, long sleeve shirts, pins, and accessories from annual events spanning 2011-2017. The products collectively support the organization's mission of funding research, providing information resources, community outreach, and clinical trial support for patients and families affected by rare histiocytic disorders including LCH, HLH, ECD, JXG, and Rosai-Dorfman Disease.
Differentiator
Problem solved
Functional benefit
Brands
- Histio eStore: Online retail store operated by the Histiocytosis Association selling awareness merchandise, apparel, and educational materials to raise funds for the organization.
Products and services
- Histio eStore Online retail storefront selling awareness merchandise, apparel, accessories, educational materials, and event-related products to raise funds for the Histiocytosis Association's mission of funding research and supporting patients and families affected by histiocytic disorders. International shipping available with calculated rates.
- Histio Awareness Kits Free educational resource kits containing awareness posters, Quick Fact cards, awareness balloons, and disease-specific brochures for six histiocytic disorders, available for the cost of shipping only. Targeted at patients, families, schools, and community advocates to spread awareness.
- Physician Finder Directory Searchable online directory of 350+ physicians in 50+ countries who specialize in treating histiocytic disorders, enabling patients and families worldwide to find qualified specialists.
- Histiocytosis Disorder Research Funding Program Annual grant funding program that awards research grants to medical researchers studying histiocytic disorders. $7 million in total research has been funded since 1986, contributing to treatment advances and FDA-approved therapies.
- Student Scholarship Program Educational scholarship program for students affected by histiocytic disorders, providing financial assistance for higher education pursuits.
- Ingrassia Early Career Travel Scholarship Travel scholarship for early-career researchers and clinicians working in the histiocytosis field to attend scientific meetings and professional development opportunities.
- Beyond The Diagnosis Podcast Original podcast series produced by the Association sharing stories, interviews, and educational information about histiocytic disorders, available to the patient, family, and professional community.
- Histio Peer to Peer Chats Online peer-to-peer support community where patients and caregivers connect to share experiences, offer mutual support, and discuss living with histiocytic disorders.
Quantifiable outcome
- $7 million in total research funded resulting in fewer patient fatalities and more effective treatments
- +3 more outcomes
Companies that use Histiocytosis Association
Customer profileNamed customers2 records
Segments4 records
Ideal customer profiles3 records
Histiocytosis Association technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Histiocytosis Association partnerships and signals
Strategic signalScale indicators4 records
Recent moves5 records
Expansion highlights4 records
Histiocytosis Association competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): Leading U.S. umbrella advocacy organization for all rare diseases; the Histiocytosis Association is a NORD member. Highly comparable mission: patient advocacy, research funding, physician resources, and disease-specific support programs.
- American Cancer Society: Large U.S. nonprofit funding cancer research and patient support. Relevant broad incumbent given histiocytic neoplasms are classified as cancers by NCCN and WHO, making the Association an adjacent provider within a larger giving landscape.
- Leukemia & Lymphoma Society (LLS): Large U.S. nonprofit funding blood cancer research and patient support. Comparable business model (donations + research grants + patient resources) and overlap with hematologic histiocytic disorders like HLH.
Emerging players
- Lymphoma Research Foundation: Nonprofit funding lymphoma research, including the histiocytic neoplasm category. Comparable in donations-driven research funding and patient education programs.
- St. Baldrick's Foundation: Childhood cancer research and support nonprofit. Overlaps with the pediatric LCH patient segment and uses a comparable event-driven fundraising model.
Direct peers
- Children's Oncology Group: Research network focused on pediatric cancers including Langerhans Cell Histiocytosis. Directly comparable as a clinical trial/research infrastructure for histiocytic neoplasms.
- The Histiocyte Society: International scientific society dedicated to histiocytic disorders. The Histiocytosis Association already collaborates with this organization to connect physicians and researchers, making it the closest comparable peer in mission and disease focus.
- Histiocytosis Research Trust: UK-based charity focused specifically on histiocytic disorders. Closest geographic peer with identical disease focus and mission; competes and collaborates for research funds and patient community engagement globally.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat4 records
Key risks4 records
Key highlights6 records
Customer concentration
Histiocytosis Association social profiles
Digital presenceHistiocytosis Association financial estimates
Financial estimateRevenue estimate
Valuation estimate
Histiocytosis Association leadership team
Management profileNumber of profiles
Profiles2 records
Histiocytosis Association funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Histiocytosis Association M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about Histiocytosis Association
What does Histiocytosis Association do?
The Histiocytosis Association is a global 501(c)(3) nonprofit organization that funds research into histiocytic disorders and provides information, support, and connection resources to patients, families, and healthcare professionals. Its core offerings include research grant funding ($7 million cumulative to date), a global physician directory covering 350+ specialists in 50+ countries, peer-to-peer support chats, educational webinars, regional patient/family meetings, clinical trial information, and awareness merchandise sold through its Histio eStore to sustain operations.
Is Histiocytosis Association a public or private company?
Histiocytosis Association is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Histiocytosis Association founded?
Histiocytosis Association was founded in 1986. It employs 1 to 10 people.
Where is Histiocytosis Association based?
Histiocytosis Association is headquartered in Pitman, United States, in the North America region.
How does Histiocytosis Association make money?
Two revenue lines are on record. Donations and Charitable Contributions are the primary driver. The others are eStore Merchandise Sales.
Who are Histiocytosis Association's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), American Cancer Society and Leukemia & Lymphoma Society (LLS). Emerging players are Lymphoma Research Foundation and St. Baldrick's Foundation. Direct peers are Children's Oncology Group, The Histiocyte Society and Histiocytosis Research Trust.
Does Histiocytosis Association have an API?
No public API is recorded for Histiocytosis Association.
What industry is Histiocytosis Association in?
Histiocytosis Association's product category is Rare Disease Patient Advocacy and Support. Its primary akta.pro industry code is BPAGACAA, Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS). Its NAICS code is 813212 and its SIC code is 8090.