Alport Syndrome Foundation
- Company typePrivate
- Founded2007
- HeadquartersScottsdale, United States
- Headcount—
- GTM typeB2C
- OfferingServices
Alport Syndrome Foundation firmographics
Firmographics- Name
- Alport Syndrome Foundation
- Legal name
- Alport Syndrome Foundation
- Website
- https://alportsyndrome.org
- Company type
- Private
- Founded year
- 2007
- Operating status
- Operating
- Ownership category
- akta.pro rank
Where Alport Syndrome Foundation is headquartered
LocationHeadquarters
- HQ city
- Scottsdale
- HQ country
- United States
- HQ region
- North America
Offices1 record
Markets served
Alport Syndrome Foundation business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Operations, Technology or R&D, Marketing or Sales, Others
Revenue model
- Donations and Contributions: Tax-deductible charitable contributions from individuals, families, and supporters. ASF is a 501(c)(3) organization (EIN: 20-8237159) and all contributions are tax deductible to the extent allowed by law.
- Annual Fundraising Campaign: Q4 annual campaign that supports ASF's Research Program and many other free resources and services. Community members can create customized campaign pages to share with their networks.
- Gifts Honoring Community Members: Tribute gifts that honor members of the Alport community while supporting ASF's mission.
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Monthly | Free membership with access to all resources and programs |
Go-to-market motion3 records
Distribution channels3 records
Marketing channels11 records
Alport Syndrome Foundation product offering
Product offeringCore offering
ASF provides free education, community support, and direct research funding for patients and families affected by Alport syndrome, a rare genetic kidney disease. Core deliverables include a Patient Registry and NEPTUNE natural history study, patient and family planning guides, virtual and in-person support meetings, an annual Alport Connect gathering, clinical trial information, and an ASF Research Program that has invested over $2 million in scientific research.
Product overview
Alport Syndrome Foundation (ASF) is a patient-led, independent 501(c)(3) nonprofit organization established in 2007 that provides a comprehensive suite of free resources and programs for the Alport syndrome community. The organization offers patient education materials including a Patient Guide, Family Planning Guide, and YouTube educational videos; a dedicated Patient Registry and NEPTUNE natural history study for research advancement; Direct Connect virtual meetings and a Facebook Support Group for peer connection; Mental Health Resources and Renal Diet & Nutrition guidance; Clinical Trial information and participation opportunities; an annual Alport Connect meeting; and a free membership program with monthly communications. The ASF Research Program invests directly in research through a Scientific Advisory Research Network. All membership, events, educational resources, and programs are provided free of charge to patients and families.
Differentiator
Problem solved
Functional benefit
Products and services
- ASF Patient Registry A patient registry created specifically for the Alport syndrome patient population to advance research and connect patients with clinical trials.
- Patient Guide Comprehensive patient education resource covering diagnosis, treatment, genetics, and living with Alport syndrome.
- Family Planning Guide Educational resource helping patients learn about Alport syndrome inheritance patterns and the importance of genetic testing for family planning.
- ASF Research Program Direct investment in Alport syndrome research funding through the Scientific Advisory Research Network, having deployed over $2 million as of Fall 2022.
- Direct Connect Meetings Virtual meetings for patients to discuss topics of importance, connect with others, and ask questions in a supportive environment.
- Facebook Support Group ASF-moderated online support community representing over 75 countries with 3,400+ individuals living with Alport syndrome.
- NEPTUNE Natural History Study Natural history study for Alport syndrome patients to contribute data for research and clinical trial development.
- Mental Health Resources Resources and support for emotional and mental well-being for Alport patients and their families.
- Renal Diet & Nutrition Resources Educational materials and guidance on nutrition and diet for patients managing kidney health with Alport syndrome.
- Clinical Trial Information Information about current and past clinical trials exploring new treatments for Alport syndrome, including active studies and participation opportunities.
- Alport Connect Annual Meeting Annual patient and family meeting featuring educational sessions, expert presentations, and community networking opportunities.
- YouTube Educational Videos Video content featuring patient stories, educational presentations from medical experts, and information about living with Alport syndrome.
- Free Membership Program No-cost membership offering monthly e-newsletters, updates on research, clinical trial information, events, and ASF programs and services.
- Volunteer Program Opportunities for patients and community members to contribute through research participation, patient support, awareness raising, and advocacy efforts.
Quantifiable outcome
- Over $2 million invested in research since founding in 2007 through Fall 2022
- +1 more outcomes
Companies that use Alport Syndrome Foundation
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles3 records
Alport Syndrome Foundation technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
Alport Syndrome Foundation partnerships and signals
Strategic signalPartnerships
One partnership is on record.
- National Kidney Foundation (NKF)flagshipIn August 2018, ASF collaborated with NKF to organize an Externally-Led Patient Focused Drug Development (EL-PFDD) meeting. This partnership brought together patients, FDA representatives, pharmaceutical companies, and doctors to hear from patients about their disease experience. The collaboration resulted in the 'Voice of the Patient' report documenting Alport patient experiences.
Scale indicators4 records
Recent moves6 records
Expansion highlights5 records
Alport Syndrome Foundation competitors and assessment
Company assessmentBroad incumbents
- Genetic Alliance: US nonprofit federation supporting genetic disease patient organizations. ASF is a candidate member/comparable entity within the genetic disease advocacy ecosystem.
- National Kidney Foundation (NKF): Largest US kidney disease patient and research organization. NKF is already an ASF partner (2018 EL-PFDD collaboration) and competes for kidney-disease donor dollars while serving overlapping patient populations.
- American Kidney Fund: National kidney disease nonprofit providing direct financial assistance, education, and advocacy. Competes with ASF for kidney-focused donor mindshare and serves a broader (non-rare) kidney disease population.
Direct peers
- National Organization for Rare Disorders (NORD): US umbrella organization for rare disease patient advocacy groups. NORD directly parallels ASF's model of patient-led education, research support, and community building, though at a much broader disease-agnostic scale.
- NephCure Kidney International: Patient advocacy nonprofit focused on rare kidney diseases including nephrotic syndrome. Closely comparable to ASF in mission, patient-registry activity, research funding, and small-team nonprofit structure.
- PKD Foundation: Patient-led foundation for polycystic kidney disease (PKD), another rare genetic kidney disease. Shares ASF's structure of patient registry, research grants, community events, and pharma partnerships.
- EveryLife Foundation for Rare Diseases: Rare disease policy and advocacy nonprofit. Comparable as a patient-advocacy organization driving FDA engagement and policy work on behalf of small patient populations, including Alport patients.
Regional players
- Alport UK: UK-based Alport syndrome patient organization. Directly comparable in disease focus and patient-led model, but operates primarily in the United Kingdom rather than globally.
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
Alport Syndrome Foundation social profiles
Digital presenceAlport Syndrome Foundation financial estimates
Financial estimateRevenue estimate
Valuation estimate
Alport Syndrome Foundation leadership team
Management profileNumber of profiles
Profiles3 records
Alport Syndrome Foundation funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
Alport Syndrome Foundation 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 Alport Syndrome Foundation
What does Alport Syndrome Foundation do?
ASF provides free education, community support, and direct research funding for patients and families affected by Alport syndrome, a rare genetic kidney disease. Core deliverables include a Patient Registry and NEPTUNE natural history study, patient and family planning guides, virtual and in-person support meetings, an annual Alport Connect gathering, clinical trial information, and an ASF Research Program that has invested over $2 million in scientific research.
Is Alport Syndrome Foundation a public or private company?
Alport Syndrome Foundation is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Alport Syndrome Foundation founded?
Alport Syndrome Foundation was founded in 2007.
Where is Alport Syndrome Foundation based?
Alport Syndrome Foundation is headquartered in Scottsdale, United States, in the North America region.
How does Alport Syndrome Foundation make money?
Three revenue lines are on record. Donations and Contributions are the primary driver. The others are annual Fundraising Campaign and gifts Honoring Community Members.
Who are Alport Syndrome Foundation's main competitors?
Broad incumbents on record are Genetic Alliance, National Kidney Foundation (NKF) and American Kidney Fund. Direct peers are National Organization for Rare Disorders (NORD), NephCure Kidney International, PKD Foundation and EveryLife Foundation for Rare Diseases. Alport UK is listed as a regional player.
Does Alport Syndrome Foundation have an API?
No public API is recorded for Alport Syndrome Foundation.