RASopathies Network USA
RASopathies Network USA is a 501c3 nonprofit that serves as the primary convening body for the global RASopathies community, connecting affected individuals and families, clinicians, and researchers through biennial symposia, a clinician directory spanning 8 countries, educational resources, and patient registries.
- Company typePrivate
- Founded2010
- HeadquartersAltadena, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What RASopathies Network USA does
RASopathies Network USA is a 501c3 nonprofit patient advocacy and research coordination organization incorporated in 2010 and headquartered in Altadena, California, with additional offices in Davis, California and Pittsburgh, Pennsylvania. Its mission is to serve as the primary unifying body for the global RASopathies community — a group of rare genetic conditions caused by variants in the RAS/MAPK signaling pathway that collectively affect approximately 1 in 2,000 individuals worldwide. The organization serves four core segments: affected individuals and their families (primary), clinicians and healthcare providers, researchers and scientists, and partner patient advocacy organizations such as CFC International, the Costello Syndrome Family Network, the Noonan Syndrome Foundation, and the NF Network.
RASopathies Network USA firmographics
Firmographics- Name
- RASopathies Network USA
- Legal name
- RASopathies Network USA
- Website
- https://rasopathiesnet.org
- Company type
- Private
- Founded year
- 2010
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- RASopathies Network USA is a 501c3 nonprofit that serves as the primary convening body for the global RASopathies community, connecting affected individuals and families, clinicians, and researchers through biennial symposia, a clinician directory spanning 8 countries, educational resources, and patient registries.
- Ownership category
- akta.pro rank
RASopathies Network USA industry classification
Industry- Product category
- Rare Disease Patient Advocacy
- NAICS
- Individual and Family Services (6241), Other Similar Organizations (except Business, Professional, Labor, and Political Organizations) (813990), Other Individual and Family Services (624190)
- SIC
- Services-Social Services (8300), Services-Membership Organizations (8600), Services-Health Services (8000)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
Keywords
Where RASopathies Network USA is headquartered
LocationHeadquarters
- HQ city
- Altadena
- HQ country
- United States
- HQ region
- North America
Offices2 records
Markets served
RASopathies Network USA 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 Fundraising: The organization raises funds through direct donations, online giving (via Stripe and PayPal), and mail-in checks. Corporate matching gift programs are supported through Double the Donation and GiveSmart databases.
- Event-Based Fundraising: Community fundraising events and campaigns organized by volunteers and supporters, such as the annual Penn Million Dollar Bike Ride and individual fundraisers.
- Government and Institutional Grants: Partial funding received from government agencies including the National Center for Advancing Translational Sciences (NCATS), NICHD, and NIAMS (grant 1R13TR005697-01) for symposium support. Also partners with the Penn Million Dollar Bike Ride for research grants.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels8 records
RASopathies Network USA product offering
Product offeringCore offering
RASopathies Network USA is a 501c3 nonprofit patient advocacy organization that connects individuals and families affected by RASopathies (a group of rare genetic syndromes caused by mutations in the RAS/MAPK pathway) with specialized clinicians, researchers, and educational resources. It operates a global clinician directory, runs biennial international scientific symposia, supports a patient contact registry (PATRAS), funds pilot research grants, and disseminates webinars, publications, and clinical guidelines—all provided free of charge to the community.
Product overview
RASopathies Network USA is a patient advocacy organization operating primarily through its website platform (rasopathiesnet.org) as a centralized hub for the RASopathies community. The organization functions as a 501c3 nonprofit partnership between RASopathies Network USA and RASopathies Network UK. The core offerings include the main website providing comprehensive information about RASopathies syndromes, a RASopathy Clinicians Directory listing specialists worldwide, a Webinars Library with educational medical content, a Research Studies/Clinical Trials listing page connecting patients with studies, the PATRAS Patient Registry for research data collection, Scientific Meetings coordination for international symposiums, Publications repository, RASnet-Funded Grants program, Animal Models directory for researchers, and a Contact Registry. Together these products serve to connect families, clinicians, and researchers while advancing research toward improving quality of life for individuals with RASopathies.
Differentiator
Problem solved
Functional benefit
Products and services
- International RASopathies Symposium A biennial international scientific symposium convening families, clinicians, researchers, and industry representatives to share research on RASopathies and the RAS/MAPK signaling pathway. The 9th symposium drew 141 in-person and 16 virtual attendees from 13 countries.
- RASopathy Clinicians Directory A searchable online directory of RASopathy specialists and multidisciplinary clinics across the United States, France, Germany, Great Britain, Italy, Japan, the Netherlands, and Singapore. Enables patients and families worldwide to locate clinicians with expertise in RASopathies.
- PATRAS Patient Registry The PATient-based Registry for phenotyping and therapy evaluation in RASopathies (PATRAS), operated under the EURAS European RASopathies Society with recruitment coordinated by Syngap Elternhilfe e.V. in Germany. Provides structured patient-phenotype data for natural history research and clinical trial recruitment.
- RASnet-Funded Research Grants A competitive research grant program funding pilot and translational research projects on RASopathies. Grants are administered through partnerships including the Penn Medicine Million Dollar Bike Ride program, with past awards to researchers at Brigham and Women's Hospital ($58,222 in 2024) and Murdoch Children's Research Institute ($60,755 in 2023).
Quantifiable outcome
- Biennial International RASopathies Symposium draws ~157 attendees from 13 countries
- +1 more outcomes
Companies that use RASopathies Network USA
Customer profileSegments4 records
Ideal customer profiles4 records
RASopathies Network USA technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
RASopathies Network USA partnerships and signals
Strategic signalPartnerships
Ten partnerships are on record, tiered major, minor and core.
- National Center for Advancing Translational Sciences (NCATS)majorPartial symposium funding provided via grant 1R13TR005697-01 from NCATS, NICHD, and NIAMS. NCATS is part of the NIH, supporting translational science to improve health. The grant enabled the 9th International RASopathies Symposium.
- Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD)majorCo-funder of 9th International RASopathies Symposium via grant 1R13TR005697-01 along with NCATS and NIAMS.
- National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)majorCo-funder of 9th International RASopathies Symposium via grant 1R13TR005697-01 along with NCATS and NICHD.
- 9th International RASopathies Symposium — pharma/biotech partnersminorThe 9th International RASopathies Symposium (July 2025, Orlando) featured pharmaceutical and biotech company participation, including BioMarin (sponsor of the CANOPY NS clinical trial), with a goal to engage companies to develop targeted trials for RASopathies therapy.
- National Organization for Rare Disorders (NORD)coreRASopathies Network USA is an active member of NORD, participating in the broader rare disease advocacy community. The NORD membership provides access to policy advocacy resources, educational programming, and a network of 300+ rare disease member organizations.
- Global Genes ProjectcoreFounding member of the Global Advocacy Alliance under the Global Genes Project. Global Genes is a rare and genetic disease patient advocacy organization that promotes the needs of the rare and genetic disease community through toolkits, resources, and coalition-building.
- Genetic AllianceminorMember organization of Genetic Alliance, a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities.
- PATRAS Registry (EURAS / Syngap Elternhilfe)majorThe PATient-based Registry for phenotyping and therapy evaluation in RASopathies (PATRAS) is at the heart of EURAS (European RASopathies Society) and recruitment is coordinated by partner Syngap Elternhilfe e.V. (Germany). RASopathies Network USA supports and promotes this international registry.
- NCI RASopathies Natural History StudymajorThe National Cancer Institute (NCI) conducts a longitudinal RASopathies cohort study. RASopathies Network USA actively recruits participants and disseminates information about the study (https://rasopathies.cancer.gov/). The study is registered at clinicaltrials.gov.
- RASopathies Network UKcoreRASopathiesNet is a formal partnership between RASopathies Network USA and RASopathies Network UK. Both organizations jointly produce the biennial International RASopathies Symposia and share governance of the RASNet brand and mission.
Scale indicators3 records
Recent moves6 records
Expansion highlights5 records
RASopathies Network USA competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): The umbrella US rare disease advocacy organization of which RASopathies Network USA is a member. NORD serves 300+ rare disease patient organizations with policy advocacy, education, and research infrastructure — overlapping mission and constituency but at vastly greater scale across all rare diseases.
- Genetic Alliance: Nonprofit health advocacy organization committed to transforming health through genetics; RASopathies Network USA is a member organization. Overlapping mission focused on genetic disease communities, though Genetic Alliance operates at a broader genetic-condition level rather than a single pathway.
Direct peers
- Noonan Syndrome Foundation: Partner/sister patient advocacy organization for Noonan syndrome, the most prevalent RASopathy (~1:1,000). Runs its own family conferences and biennial fundraisers; directly comparable in mission, structure, and beneficiary base to RASopathies Network USA but narrower in syndrome scope.
- Children's Tumor Foundation: Leading advocacy and research-funding organization for neurofibromatosis (NF1, a core RASopathy). Comparable model — patient advocacy, research grants, clinician directory, symposia, and pharma partnerships — but focused on a single RASopathy syndrome with a much larger addressable population.
- Costello Syndrome Family Network (CSFN): Founder family organization for Costello syndrome; one of three groups whose leadership initiated RASopathies Network USA in 2009. Directly comparable patient-advocacy structure, family conferences, and clinical guidance resources for a single RASopathy population.
- Global Genes: Rare and genetic disease advocacy organization whose Global Advocacy Alliance includes RASopathies Network USA as a founding member. Operates in the same patient-advocacy, coalition-building, and toolkits-for-rare-disease space; comparable mission and target beneficiary base.
- RASopathies Network UK: Formal sister organization co-producing the biennial International RASopathies Symposia under the RASNet brand. Same mission, same governance model, and partially overlapping board — effectively the UK arm of the same convening platform.
- CFC International: Partner/sister organization for Cardiofaciocutaneous (CFC) syndrome — one of the founding family organizations that helped create RASopathies Network USA. Same advocacy/research-coordination model, same donor base, but syndrome-specific focus on the rarest RASopathy (~1:150,000).
- NF Network: Partner/sister organization for Neurofibromatosis (NF1). Comparable patient advocacy, education, and research coordination model; RASopathies Network USA lists NF Network as a partner organization and both serve the NF1 community through overlapping clinician and research networks.
Regional players
- European RASopathies Society (EURAS): European counterpart coordinating the PATRAS registry with Syngap Elternhilfe in Germany. Operates in the same RASopathies space with same target community, but geographically focused on Europe rather than the US/UK axis RASopathies Network USA primarily serves.
Market position
Strengths4 records
Weaknesses5 records
Competitive moat5 records
Key risks6 records
Key highlights7 records
Customer concentration
RASopathies Network USA social profiles
Digital presenceRASopathies Network USA financial estimates
Financial estimateRevenue estimate
Valuation estimate
RASopathies Network USA leadership team
Management profileNumber of profiles
Profiles7 records
RASopathies Network USA funding detail
Funding detailFunding overview
Funding rounds
Investors
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RASopathies Network USA M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about RASopathies Network USA
What does RASopathies Network USA do?
RASopathies Network USA is a 501c3 nonprofit patient advocacy organization that connects individuals and families affected by RASopathies (a group of rare genetic syndromes caused by mutations in the RAS/MAPK pathway) with specialized clinicians, researchers, and educational resources. It operates a global clinician directory, runs biennial international scientific symposia, supports a patient contact registry (PATRAS), funds pilot research grants, and disseminates webinars, publications, and clinical guidelines—all provided free of charge to the community.
Is RASopathies Network USA a public or private company?
RASopathies Network USA is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was RASopathies Network USA founded?
RASopathies Network USA was founded in 2010. It employs 1 to 10 people.
Where is RASopathies Network USA based?
RASopathies Network USA is headquartered in Altadena, United States, in the North America region.
How does RASopathies Network USA make money?
Three revenue lines are on record. Donations and Fundraising is the primary driver. The others are event-Based Fundraising and government and Institutional Grants.
Who are RASopathies Network USA's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD) and Genetic Alliance. Direct peers are Noonan Syndrome Foundation, Children's Tumor Foundation, Costello Syndrome Family Network (CSFN), Global Genes, RASopathies Network UK, CFC International and NF Network. European RASopathies Society (EURAS) is listed as a regional player.
Does RASopathies Network USA have an API?
No public API is recorded for RASopathies Network USA.
What industry is RASopathies Network USA in?
RASopathies Network USA's product category is Rare Disease Patient Advocacy. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations. Its NAICS code is 6241 and its SIC code is 8300.