CLOVES SYNDROME COMMUNITY
CLOVES Syndrome Community is a 501c3 patient-led nonprofit founded in 2009 that supports patients and families affected by CLOVES Syndrome and PIK3CA-related overgrowth conditions through patient registry, research grants, an annual scientific meeting, family camps, and educational resources.
- Company typePrivate
- Founded2009
- HeadquartersBrowns Point, United States
- Headcount1–10
- GTM typeB2C
- OfferingServices
What CLOVES SYNDROME COMMUNITY does
CLOVES Syndrome Community (CSC) is a 501c3 patient-led nonprofit advocacy organization founded in 2009 by Kristen Davis, headquartered in W Kennebunk, Maine, with a mailing address in Browns Point, Washington. The organization serves patients and families affected by CLOVES Syndrome, an ultra-rare congenital overgrowth disorder caused by somatic PIK3CA mutations, as well as the broader PIK3CA-Related Overgrowth Spectrum (PROS) community. Its non-profit mission centers on supporting, educating, and empowering affected families while accelerating research toward treatments.
CSC's core service portfolio includes a patient contact registry (the CLOVES Syndrome Registry on the IAMRare platform), a periodic CLOVES Syndrome Science News newsletter, patient and family educational resources, an annual family retreat called Betsy's Camp, an annual International Scientific Meeting for PIK3CA Related Conditions, and a research grant program that has awarded funds to academic labs (Canaud Lab, University of Edinburgh Patton Lab, UCL, UNC Chapel Hill, and others). Underlying technology is limited to a patient registry database and research data collection platform; CSC does not appear to build proprietary software beyond what third-party platforms (IAMRare, NORD, AllStripes, givebutter.com, Kindful) provide.
The business model is a non-profit donations-and-grants model. CSC is funded primarily by charitable contributions from individuals and families, foundation grants (most notably a $450K–$600K award from the Chan Zuckerberg Initiative's Rare As One Network), and merchandise sales. All patient services are provided free of charge. The organization operates with a small team (approximately 5 employees, including 4 part-time staff hired in 2021) and competes with other rare disease advocacy organizations for donor attention and CZI network placement rather than for commercial revenue.
CLOVES SYNDROME COMMUNITY firmographics
Firmographics- Name
- CLOVES SYNDROME COMMUNITY
- Legal name
- CLOVES Syndrome Community
- Website
- https://clovessyndrome.org
- Company type
- Private
- Founded year
- 2009
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- CLOVES Syndrome Community is a 501c3 patient-led nonprofit founded in 2009 that supports patients and families affected by CLOVES Syndrome and PIK3CA-related overgrowth conditions through patient registry, research grants, an annual scientific meeting, family camps, and educational resources.
- Ownership category
- akta.pro rank
CLOVES SYNDROME COMMUNITY industry classification
Industry- Product category
- Patient Advocacy and Rare Disease Support Services
- NAICS
- Other Individual and Family Services (624190), Civic and Social Organizations (81341), Social Advocacy Organizations (81331), 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 industry
- Special Education, Disability Support & Inclusive Education Nonprofits (BPAGADAH)
Keywords
Where CLOVES SYNDROME COMMUNITY is headquartered
LocationHeadquarters
- HQ city
- Browns Point
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
CLOVES SYNDROME COMMUNITY 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 Grants: As a 501c3 non-profit, the organization relies primarily on charitable donations from individuals and families, as well as grants from foundations. The Chan Zuckerberg Initiative has provided significant funding through the Rare As One Network.
- Merchandise Sales: The organization operates a shop selling merchandise to generate additional revenue for operations.
Go-to-market motion1 record
Distribution channels3 records
Marketing channels6 records
CLOVES SYNDROME COMMUNITY product offering
Product offeringCore offering
CLOVES Syndrome Community is a 501c3 patient-led nonprofit that supports patients and families affected by CLOVES syndrome and related PIK3CA-related overgrowth spectrum (PROS) conditions through free educational resources, a patient registry, support groups, family retreats, and a research grant program. It convenes an annual International Scientific Meeting and partners with NORD and the Chan Zuckerberg Initiative's Rare As One Network to accelerate research toward treatments. The organization funds scientific studies and publishes children's books to help explain the condition.
Product overview
CLOVES Syndrome Community is a patient-led nonprofit organization (501c3) that serves as an advocacy and support organization rather than a technology company. The organization provides a portfolio of services including: a patient registry (CLOVES Syndrome Registry) for collecting medical information; the CLOVES Syndrome Science News newsletter for communicating research updates; patient and family resources including screening guidelines and FAQs; annual retreats (Betsy's Camp); an annual International Scientific Meeting for PIK3CA Related Conditions; a research grant program funding studies on CLOVES and PROS; a patient-led PIK3CA Related Conditions Research Network; and a natural history study partnership with NORD. These services work together to support, educate, and empower those affected by CLOVES syndrome while accelerating research toward treatments.
Differentiator
Problem solved
Functional benefit
Products and services
- CLOVES Syndrome Registry A patient contact registry collecting contact and medical information from individuals with CLOVES Syndrome and PROS conditions to inform them about discoveries and research opportunities. It is for patients and families affected by CLOVES Syndrome.
- CLOVES Syndrome Science News Newsletter A periodic email newsletter informing individuals with CLOVES Syndrome and their caregivers about discoveries, research opportunities, and opportunities to participate in research studies.
- Patient and Family Resources Educational materials including screening guidelines, FAQs, medical provider information, and support resources for patients and families affected by CLOVES Syndrome.
- Betsy's Camp & Retreat Annual family camp and retreat offering community, fun, and relaxation for people with CLOVES Syndrome and their families.
- International Scientific Meeting for PIK3CA Related Conditions Annual patient-led scientific conference bringing together researchers, physicians, and patient advocacy organizations to advance research on PIK3CA-related conditions.
- Research Grant Program Funding program awarding grants to researchers studying CLOVES Syndrome, PROS, and related PIK3CA conditions, including zebrafish models, stem cell research, and clinical studies.
- PIK3CA Related Conditions Research Network A patient-led collaborative research network connecting patients, families, researchers, and physicians to accelerate treatment options and improve quality of life for people with CLOVES and PIK3CA Related Conditions.
- Natural History Study with NORD A global research study launched with the National Organization for Rare Disorders (NORD) to advance understanding of CLOVES Syndrome through data collection.
- Children's Books about CLOVES Syndrome Books published for children to help explain CLOVES Syndrome to young patients and their siblings.
Companies that use CLOVES SYNDROME COMMUNITY
Customer profileNamed customers1 record
Segments2 records
Ideal customer profiles2 records
CLOVES SYNDROME COMMUNITY technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature2 records
CLOVES SYNDROME COMMUNITY partnerships and signals
Strategic signalPartnerships
Five partnerships are on record, tiered core, major and minor.
- National Organization for Rare Disorders (NORD)coreCSC and NORD launched a natural history study of CLOVES Syndrome with global reach to advance understanding and treatments for this rare disease causing mobility challenges, pain, vascular anomalies, and progressive overgrowth.
- Odylia TherapeuticscoreOdylia provides scientific and strategic guidance regarding the current state of research and clinical progress towards treatments for CLOVES syndrome. Their work enables CSC to deploy resources effectively to seek new treatments and develop ongoing research strategies.
- AllStripesmajorPartnership to create a research database that will power new PIK3CA-related overgrowth spectrum (PROS) research studies. Families contribute medical records to support research efforts.
- M-CM Network, KTSupport, Wonderfils Smiles, LGDA, Project FAVA, GoPI3Ks, AIMPminorMultiple patient advocacy organizations collaborated as the planning committee for the International Scientific Meeting for PIK3CA Related Conditions, representing related overgrowth syndromes and vascular anomalies.
- Canaud Labminor$20,000 research donation to Canaud Lab for creation of animal models to test PIK3CA inhibitors and study PIK3CA-related overgrowth physiopathology.
Scale indicators4 records
Recent moves6 records
Expansion highlights5 records
CLOVES SYNDROME COMMUNITY competitors and assessment
Company assessmentBroad incumbents
- National Organization for Rare Disorders (NORD): NORD is the largest US rare disease umbrella organization and a direct strategic partner of CSC. Both organizations serve patients with rare diseases through advocacy, research support, and natural history studies, making NORD a highly comparable peer despite its much larger scale.
- EveryLife Foundation for Rare Diseases: EveryLife Foundation is a policy-focused rare disease advocacy organization that, like CSC, advocates for accelerated rare disease treatment development. Both organizations work on issues like newborn screening, research funding, and FDA engagement.
- Global Genes: Global Genes is a leading rare disease advocacy and patient support organization. While broader in scope than CSC, both organizations operate in the rare disease patient advocacy space with similar education, support, and community-building missions.
- Children's Tumor Foundation: Children's Tumor Foundation funds research and patient support for neurofibromatosis, another rare genetic condition with overgrowth features. Both organizations operate patient registries, fund research grants, and host scientific meetings.
Direct peers
- Wonderful Smiles (Wonderfils): Wonderful Smiles supports children with cleft lip and palate and other facial differences. They are a co-planning committee member with CSC for the International Scientific Meeting and share the patient advocacy and family support mission.
- Project FAVA: Project FAVA advocates for patients with Fibro-Adipose Vascular Anomaly, another rare vascular anomaly disorder in the PROS family. CSC and Project FAVA are co-planning committee members of the International Scientific Meeting for PIK3CA Related Conditions.
- Lymphangiomatosis & Gorham's Disease Alliance (LGDA): LGDA is a patient-led rare disease advocacy organization serving patients with lymphangiomatosis and Gorham's disease, which involve vascular and lymphatic anomalies similar to CLOVES. They co-organized the International Scientific Meeting with CSC.
- KTSupport (Klippel-Trenaunay Support Group): KTSupport is a patient advocacy organization for Klippel-Trenaunay syndrome, another condition in the PIK3CA-related overgrowth spectrum. They co-organized the International Scientific Meeting with CSC and serve a directly overlapping patient population.
- M-CM Network: M-CM Network is a patient-led rare disease advocacy organization for Macrocephaly-Capillary Malformation syndrome, another PROS condition caused by PIK3CA mutations. CSC and M-CM Network co-organized the International Scientific Meeting for PIK3CA Related Conditions, making them directly comparable peer organizations.
Regional players
- AIMP (Associazione Italiana Malformazioni Pediatriche): AIMP is an Italian patient advocacy organization for pediatric vascular malformations. They are part of the International Scientific Meeting planning committee with CSC, representing an international peer serving the same rare disease family in Europe.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights7 records
Customer concentration
CLOVES SYNDROME COMMUNITY social profiles
Digital presenceCLOVES SYNDROME COMMUNITY financial estimates
Financial estimateRevenue estimate
Valuation estimate
CLOVES SYNDROME COMMUNITY leadership team
Management profileNumber of profiles
Profiles1 record
CLOVES SYNDROME COMMUNITY funding detail
Funding detailFunding overview
Funding rounds
Investors
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CLOVES SYNDROME COMMUNITY M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about CLOVES SYNDROME COMMUNITY
What does CLOVES SYNDROME COMMUNITY do?
CLOVES Syndrome Community is a 501c3 patient-led nonprofit that supports patients and families affected by CLOVES syndrome and related PIK3CA-related overgrowth spectrum (PROS) conditions through free educational resources, a patient registry, support groups, family retreats, and a research grant program. It convenes an annual International Scientific Meeting and partners with NORD and the Chan Zuckerberg Initiative's Rare As One Network to accelerate research toward treatments. The organization funds scientific studies and publishes children's books to help explain the condition.
Is CLOVES SYNDROME COMMUNITY a public or private company?
CLOVES SYNDROME COMMUNITY is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was CLOVES SYNDROME COMMUNITY founded?
CLOVES SYNDROME COMMUNITY was founded in 2009. It employs 1 to 10 people.
Where is CLOVES SYNDROME COMMUNITY based?
CLOVES SYNDROME COMMUNITY is headquartered in Browns Point, United States, in the North America region.
How does CLOVES SYNDROME COMMUNITY make money?
Two revenue lines are on record. Donations and Grants are the primary driver. The others are merchandise Sales.
Who are CLOVES SYNDROME COMMUNITY's main competitors?
Broad incumbents on record are National Organization for Rare Disorders (NORD), EveryLife Foundation for Rare Diseases, Global Genes and Children's Tumor Foundation. Direct peers are Wonderful Smiles (Wonderfils), Project FAVA, Lymphangiomatosis & Gorham's Disease Alliance (LGDA), KTSupport (Klippel-Trenaunay Support Group) and M-CM Network. AIMP (Associazione Italiana Malformazioni Pediatriche) is listed as a regional player.
Does CLOVES SYNDROME COMMUNITY have an API?
No public API is recorded for CLOVES SYNDROME COMMUNITY.
What industry is CLOVES SYNDROME COMMUNITY in?
CLOVES SYNDROME COMMUNITY's product category is Patient Advocacy and Rare Disease Support Services. Its primary akta.pro industry code is BPAGACAM, Rare Disease & Special Needs Support Organizations, with a secondary code of BPAGADAH, Special Education, Disability Support & Inclusive Education Nonprofits. Its NAICS code is 624190 and its SIC code is 8300.