Growing Stronger

What Growing Stronger does

Growing Stronger is a 501(c)(3) nonprofit patient advocacy organization founded in 2008 by Amer and Munira Haider following their son's diagnosis of achondroplasia, the most common form of dwarfism. The organization is dedicated to improving the quality of medical care available to individuals with achondroplasia by supporting research and providing educational and community resources to parents and caregivers throughout the patient's lifelong medical journey. Its core offerings include the ACHONversations video series featuring expert physicians and community members, comprehensive educational resources on understanding and living with achondroplasia, and therapy-specific Facebook support groups (Parents for VOXZOGO, Parents for Infigratinib, and TransCon CNP) collectively serving nearly 1,500 members worldwide. Physicians, researchers, and pharmaceutical company affiliates are explicitly prohibited from joining the community groups, preserving the authenticity of peer support.

In November 2023, Growing Stronger extended into structured research infrastructure through a partnership with RARE-X (a Global Genes program leveraging Broad Institute technology) to build a free Data Collection Program for the achondroplasia community, with the stated aim of accelerating drug and device development. The organization maintains an active presence across Facebook, Instagram (two accounts), YouTube, Twitter, and LinkedIn, and published a 2023 Annual Report. In June 2023, co-founders delivered a keynote at the Bay Area Pharma Market Research Conference and attended the Global Genes / Orphan Disease Center (University of Pennsylvania) Rare Drug Development Symposium, signaling engagement with pharmaceutical market research and therapy development stakeholders. The organization does not develop proprietary technology or sell products or services.

Growing Stronger's business model is donation-based; it accepts contributions through Fidelity Charitable Gift Fund, wire transfers, stock donations, and corporate matching programs (Adobe, Cisco, Google, HP, IBM, Microsoft, Oracle, Wells Fargo, among others). All community resources and programs are provided free of charge. The organization is headquartered in Saratoga, California, with co-founders Amer and Munira Haider leading operations; no other management team, employees, or institutional investors are disclosed. The website is available in English and Urdu, indicating modest multilingual reach.

Name

Growing Stronger

Legal name

Growing Stronger

Website

https://growingstronger.org

Company type

Private

Founded year

2008

Operating status

Operating

Headcount range

1–10 employees

Short description

Growing Stronger is a parent-founded 501(c)(3) nonprofit patient advocacy organization serving nearly 1,500 parents and caregivers of children with achondroplasia globally through therapy-specific Facebook support groups, the ACHONversations educational video series, and a RARE-X Data Collection Program partnership aimed at accelerating rare-disease research.

Ownership category

akta.pro rank

Product category

Patient Advocacy Services

NAICS

Other Individual and Family Services (624190), Voluntary Health Organizations (813212)

SIC

Services-Social Services (8300), Services-Educational Services (8200)

akta.pro industry

PRIMARYBPAGACAA

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS)

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

SECONDARYBPAGACAH

Patient Advocacy, Navigation & Access to Care

Business & Public Services/Nonprofit, NGO & Social Services/Health & Medical Nonprofits

Keywords

• Patient advocacy nonprofit
• Achondroplasia support
• Rare disease education
• Caregiver community groups
• Patient data collection

Headquarters

HQ city

Saratoga

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

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

Revenue model

1. Donations and Charitable Contributions: Growing Stronger operates as a 501(c)(3) nonprofit organization funded primarily through charitable donations. The organization accepts donations through Fidelity Charitable Gift Fund, wire transfers, stock donations, and corporate matching programs. Major corporations listed for matching include Adobe, Cisco, Google, HP, IBM, Microsoft, Oracle, Wells Fargo, and others.

Go-to-market motion1 record

Distribution channels3 records

Marketing channels7 records

Core offering

Growing Stronger is a 501(c)(3) patient advocacy nonprofit that educates and supports parents and caregivers of children with achondroplasia. It delivers this through the ACHONversations video series featuring expert physicians, three Facebook parent support groups for specific pharmaceutical therapies (VOXZOGO, Infigratinib, TransCon CNP), a partnership with RARE-X for patient data collection to accelerate research, and a multilingual website providing educational resources on understanding and living with achondroplasia. All resources and community programs are provided free of charge.

Product overview

Growing Stronger is a parent-founded patient advocacy organization dedicated to improving the quality of medical care for individuals with achondroplasia. The organization offers a portfolio of educational and community-focused services: ACHONversations, a video series featuring expert discussions on achondroplasia treatment and management; the RARE-X Data Collection Program, a research initiative to accelerate therapy development; patient support groups on Facebook for peer support; and comprehensive educational resources covering understanding, living with, and staying healthy with achondroplasia. The organization also publishes annual reports to maintain transparency with its community. Growing Stronger does not offer a software product or technical platform.

Differentiator

Problem solved

Functional benefit

Products and services

• ACHONversations Educational video series featuring conversations with physicians and experts covering achondroplasia topics including orthopedic treatment, limb lengthening, spine management, genetics, endocrine care, growth therapies, and pharmaceutical advancements for parents and caregivers of children with achondroplasia.
• RARE-X Data Collection Program Data collection initiative partnering with RARE-X to gather patient data to inform researchers, enable clinical trials, study new medicines, and accelerate research and development of new drugs, devices, and therapies for achondroplasia; free to participate.
• Achondroplasia Educational Resources Comprehensive educational materials covering understanding achondroplasia, living with the condition, staying healthy, family and community topics, and therapeutic options including pharmaceutical treatments from BioMarin, QED Therapeutics, Ascendis Pharma, Tyra Biosciences, and Sanofi.
• Annual Report Annual reporting initiative documenting Growing Stronger's activities, milestones, and community impact, with the 2023 Annual Report publicly available on the organization's website.

Named customers1 record

Segments1 record

Ideal customer profiles1 record

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

Two partnerships are on record, tiered core.

• RARE-X (A Global Genes Program)coreStrategic or Co-development PartnerGrowing Stronger partners with RARE-X to build a Data Collection Program for the achondroplasia community. The partnership aims to accelerate research and development of new drugs, devices, and other therapies by collecting patient data. RARE-X is a 501(c)(3) nonprofit created by leaders in patient advocacy, medical research, biopharma, and technology. RARE-X leverages technology from the Broad Institute of MIT and Harvard. There is no cost to the achondroplasia community for participation.
• Global GenescoreStrategic or Co-development PartnerGrowing Stronger attended the Rare Drug Development Symposium hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania. The event equipped advocates with knowledge, skills, and connections needed to advance therapy development for rare disease communities. Focus was on collaboration as the foundation of success in rare disease research.

Scale indicators1 record

Recent moves6 records

Expansion highlights4 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Large U.S. umbrella advocacy and patient-services organization for all rare diseases. Comparable to Growing Stronger as a higher-level patient-advocacy and research-policy counterparty that disease-specific groups like Growing Stronger interact with for resources and policy.
• National Down Syndrome Society: Established U.S. patient advocacy nonprofit for a genetic condition affecting children. Comparable to Growing Stronger in operating an education-rich, family-support-focused nonprofit with pharma and clinical-trial engagement, but at materially larger scale.
• Global Genes: Rare-disease umbrella nonprofit whose RARE-X program is Growing Stronger's data-collection partner. Comparable as a broader rare-disease advocacy and convening organization that runs conference programming and patient-data infrastructure for many niche disease foundations.

Direct peers

• Children's Tumor Foundation: Disease-focused nonprofit driving research and patient support for neurofibromatosis. Comparable to Growing Stronger in operating model — pharma-facing research funding, patient education content, and conference-stage presence.
• Little People's Research Fund: U.S. nonprofit focused on research and support for individuals with dwarfism and skeletal dysplasias. Most directly comparable to Growing Stronger because both serve the achondroplasia/dwarfism community with research funding and community support.
• Parent Project Muscular Dystrophy: Parent-founded nonprofit funding Duchenne muscular dystrophy research and connecting families to clinical trials. Closely mirrors Growing Stronger's model of founder-led rare-disease advocacy, pharma pipeline engagement, and education content for newly diagnosed families.
• Magic Foundation: Parent-run nonprofit supporting children with growth disorders and related conditions. Comparable to Growing Stronger because it focuses on parent-led support, education, and research funding for pediatric growth-related diagnoses such as achondroplasia.
• Osteogenesis Imperfecta Foundation: Patient advocacy organization for individuals with osteogenesis imperfecta, funding research and supporting families. Comparable to Growing Stronger because it serves a skeletal rare-disease community with similar parent support, education, and research-advocacy functions.
• Foundation for Prader-Willi Research: Parent-driven rare-disease foundation funding research and clinical-trial readiness for Prader-Willi syndrome. Comparable to Growing Stronger in its blend of community support, sponsor-facing research advocacy, and active data/registry initiatives.

Market position

Strengths4 records

Weaknesses4 records

Competitive moat4 records

Key risks5 records

Key highlights6 records

Customer concentration

• Xtwitter.com/achonversations
• YouTubeyoutube.com/channel/UC26bIDkEfqZ-xUT8hhoM9DQ
• Facebookfacebook.com/teamgrowingstronger
• LinkedInlinkedin.com/company/growingstronger
• Instagraminstagram.com/growingstrongerorg

Revenue estimate

Valuation estimate

Number of profiles

Profiles2 records

Funding overview

Funding rounds

Investors

Funding detail is available on the Subscription and Enterprise plan.Contact sales →

M&A

Investments

M&A and investment is available on the Subscription and Enterprise plan.Contact sales →

Frequently asked questions about Growing Stronger