4p- Support Group

Name

4p- Support Group

Legal name

4p- Support Group

Website

https://4p-supportgroup.org

Company type

Private

Founded year

1998

Operating status

Operating

Headcount range

11–50 employees

Short description

The 4p- Support Group is a 501(c)(3) non-profit that supports more than 600 families affected by Wolf-Hirschhorn Syndrome (4p-) through free membership, a patient registry, biennial conferences, and awareness merchandise, in partnership with clinicians and international WHS organizations.

Ownership category

akta.pro rank

Product category

Rare Disease Support Services

NAICS

Individual and Family Services (6241), Child and Youth Services (624110)

SIC

Services-Social Services (8300), Services-Membership Organizations (8600)

akta.pro primary industry

Rare Disease & Special Needs Support Organizations (BPAGACAM)

akta.pro secondary industries

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA), Disability Services & Independent Living Support (BPAGACAG)

Keywords

• Rare disease support
• Chromosomal disorder advocacy
• Patient registry services
• Family support services
• Genetic disorder awareness

Headquarters

HQ city

Livingston

HQ country

United States

HQ region

North America

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D

Revenue model

1. Merchandise Sales: Sale of awareness merchandise including T-shirts, sweatshirts, stickers, pens, wristbands, magnets, and books. Products are sold through the organization's online store at various price points ranging from $1 to $45.
2. Donations: The organization accepts donations through PayPal to support operations and programs.

Pricing tiers

Go-to-market motion1 record

Distribution channels4 records

Marketing channels5 records

Core offering

The 4p- Support Group operates a free membership program for parents and legal guardians of children with 4th chromosomal abnormalities (Wolf-Hirschhorn Syndrome), providing a digital guidebook, e-newsletters, research participation opportunities, and a patient registry. The organization also sells awareness merchandise (apparel, stickers, pens, wristbands, decals, magnets, books) through its online store and hosts bi-annual national conferences connecting families with researchers and medical professionals.

Product overview

The 4p- Support Group is a 501(c)(3) non-profit organization offering a membership program with free access to research participation, a digital guidebook (The Wolf-Hirschhorn Syndrome, 4p-: A Guidebook for Families), and e-newsletters. The organization operates a Patient Registry for WHS research and conducts bi-annual National Conferences. It sells awareness merchandise including the Unique & United apparel line (t-shirts, sweatshirts, youth/toddler apparel), Awareness Day T-Shirts, wristbands, vinyl decals, magnets, pens, and books. Research offerings include care recommendations, growth charts, current research studies, and access to American Journal of Medical Genetics articles.

Differentiator

Problem solved

Functional benefit

Products and services

• Membership Program Free membership program for parents and legal guardians of children with 4th chromosomal abnormality, offering research participation opportunities, digital guidebook access, and e-newsletters.
• Patient Registry Online database that stores important patient information in a systematic way and can be queried into data reports, supporting research on Wolf-Hirschhorn Syndrome.
• National Conference Bi-annual national conferences bringing together families, researchers, and professionals working with WHS. The 2026 conference is scheduled for July 8-12 in Salt Lake City, UT.
• Current Research Studies Ongoing research initiatives including seizure treatment studies with questionnaires to gather information about seizure history and management in WHS.
• Care Recommendations and Growth Charts Updated medical care recommendations and growth charts specifically developed for individuals with Wolf-Hirschhorn Syndrome, co-developed with Dr. John C. Carey.
• Unique & United Apparel Branded clothing line including adult t-shirts, youth apparel, toddler sizes, and adult sweatshirts featuring the Unique & United design to raise awareness for Wolf-Hirschhorn Syndrome.
• Awareness Day T-Shirts Annual awareness day commemorative t-shirts sold to support Wolf-Hirschhorn Syndrome awareness, including 2025 edition.
• Wristbands Awareness wristbands available in adult and youth sizes, sold to support WHS awareness.
• Vinyl Decal Vinyl decals featuring WHS awareness messaging, available in multiple sizes.
• Magnet WHS awareness magnets sold individually or in packs of three.
• 4p- Wolf-Hirschhorn Syndrome Pen Branded pens featuring WHS awareness messaging with black ink, priced at $1.00.
• Craig Richardson Book Educational book available for $10.00, part of the organization's educational resources.
• Sophia Sticker Waterproof vinyl 3x3 inch sticker, part of a senior project to raise WHS awareness, priced at $2.00.
• Stickers and Pens Low-cost awareness items including Sophia Sticker ($2.00), 4p- Wolf-Hirschhorn Syndrome Pen ($1.00), and Vinyl Decal ($3.00-$5.00).

Quantifiable outcome

• Over 600 registered families served
• +2 more outcomes

Named customers2 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Four partnerships are on record, tiered core and minor.

• Dr. John C. Carey (University of Utah)coreStrategic or Co-development PartnerRenowned WHS expert working with the 4p- Support Group for 15+ years to develop a research agenda. Co-developed care recommendations and growth charts. Key collaborator for national conferences.
• Dr. Amy CalhouncoreStrategic or Co-development PartnerScientist collaborating with the 4p- Support Group and Dr. John Carey on WHS research initiatives.
• Related Support Groups (International)minorOthersNetwork of international WHS support groups including: WHST Support Group (UK), Asociación Española del Síndrome de Wolf-Hirschhorn (Spain), Italian Association for the Wolf-Hirschhorn Syndrome (Italy), S.O.F.T. (Support Organization for Trisomy 18, 13), Chromosome Deletion Outreach, The Genetic Alliance, UNIQUE (Rare Chromosome Disorder), and others.
• Medical and Support OrganizationsminorOthersPartners include: American Academy of Pediatrics, Kennedy Krieger Institute, Epilepsy Foundation, National Organization of Rare Diseases (NORD), Wrightslaw, About Face, Family Voices, and others providing resources and referrals for families.

Scale indicators3 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• S.O.F.T. (Support Organization for Trisomy 18, 13, and Related Disorders): A US-based family support organization for children with rare chromosomal trisomy conditions. Comparable as a small, condition-specific support group with conferences, family networks, and medical partnerships, serving a similarly rare patient population.
• Unique - Rare Chromosome Disorder Support Group: A UK-based charity supporting anyone affected by a rare chromosome disorder. Direct peer in mission and model, providing family support, information, and research collaboration for chromosomal abnormalities including WHS.
• Chromosome Deletion Outreach: A US-based non-profit supporting families affected by rare chromosomal deletions and disorders. Directly comparable as a smaller, condition-specific support organization networking families and researchers, with similar reliance on donations and volunteer leadership.

Regional players

• Wolf-Hirschhorn Syndrome Trust (UK): The UK-based WHS support group, listed as an international partner. Same condition, same mission, but operates primarily in the UK while the 4p- Support Group leads in the US – a sister organization in the global WHS network.
• Associazione Italiana Sindrome Wolf-Hirschhorn: The Italian WHS support association, listed as an international partner. Comparable on mission, family support, and condition-specific focus, but operates regionally within Italy.
• Asociación Española del Síndrome de Wolf-Hirschhorn: The Spanish WHS patient association, a sister organization in the international WHS network. Comparable mission and family-support model, but geographically limited to Spain.

Broad incumbents

• Genetic Alliance: A US non-profit federation of genetic condition support organizations that serves as a parent network for organization including the 4p- Support Group. Comparable on research advocacy and resource referral, but operates at a broader, federated scale.
• National Organization for Rare Disorders (NORD): The largest US umbrella advocacy organization for rare diseases, of which the 4p- Support Group is a referral partner. Operates a broader portfolio across 1,000+ conditions versus a single-condition focus, but comparable on member support, research grantmaking, and advocacy.

Others

• Epilepsy Foundation: A US national non-profit supporting patients with seizures/epilepsy, a common comorbidity of WHS. Functions as a referral and resource partner rather than a direct competitor, relevant because seizure-treatment research is an active 4p- Support Group initiative.
• Kennedy Krieger Institute: A US-based specialty hospital and research institution serving children with developmental disabilities and rare disorders. A listed referral partner rather than a direct competitor, comparable on care recommendations and clinical research collaboration for WHS families.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat4 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/4psupportgroup

Compliance1 record

Revenue estimate

Valuation estimate

Number of profiles

Profiles11 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about 4p- Support Group