International Rett Syndrome Foundation
The first nonprofit to focus only on Rett syndrome, a parents' cause joined in 2007 by a parents' research foundation, now standing between the families who live with Rett and the companies trying to treat it.
Financial profile
International Rett Syndrome Foundation · EIN 31-1682518 · 501(c)(3)
| Fiscal year | Total revenue | Contributions | Program services | Total expenses | Net assets | Year end |
|---|---|---|---|---|---|---|
| FY2024 | $4,813,748 | $3,808,219 | $334,015 | $5,531,022 | $4,987,425 | Dec 2024 |
| FY2023 | $4,855,820 | $3,586,302 | $161,492 | $3,723,772 | $5,884,190 | Dec 2023 |
| FY2022 | $3,669,308 | $3,581,751 | $310,152 | $5,494,227 | $4,465,901 | Dec 2022 |
| FY2021 | $4,132,287 | $4,006,260 | $250 | $4,097,063 | $6,030,519 | Dec 2021 |
| FY2020 | $3,850,950 | $3,832,035 | $0 | $2,465,808 | $5,622,968 | Dec 2020 |
| FY2019 | $4,782,320 | $4,909,551 | $4,166 | $2,898,109 | $4,285,283 | Dec 2019 |
Figures exactly as reported. A blank cell was blank on the form. The fiscal year links to the filing.
Peer societies
Five societies IRSF is read alongside.
DSF
Dravet Syndrome Foundation
A foundation that aggressively raises funds for Dravet syndrome and related epilepsies, funding research…
6 companies named
BDSRA
Batten Disease Support and Research Association
A family founded organization that turns the experience of a rare fatal childhood disease into funded…
FSARA
Friedreich's Ataxia Research Alliance
A patient-founded nonprofit dedicated to curing Friedreich's ataxia by funding peer-reviewed research…
31 companies named
TSC Alliance
TSC Alliance
A community that four mothers started in Southern California in 1974 and that has grown into the research and…
59 companies named
DMRF
Dystonia Medical Research Foundation
A family foundation that Sam and Fran Belzberg began in 1976 and that grew into a community of 50,000 and the…
43 companies named
Who backs IRSF
Every company IRSF names publicly as a supporter, exactly as published. Companies also named by other associations on Sociogene come first.
| Company | Support as published | Also named by |
|---|---|---|
| Acadia PharmaceuticalsPublished as Acadia | Meeting sponsor | ACHCA AANP ACMGG AES ANA +3 |
| Lundbeck | Exhibitor | AAN AES AHS APA NCSL +3 |
| Novartis | Corporate partner | ADLM AAD AAN AACR AANEM +3 |
| UCB | Meeting sponsor | AAD AAN AANEM AANN ACNS +3 |
| Anovo | Meeting sponsor | BSF |
| Johnson SupplyPublished as Johnson HVAC Distribution | Foundation donor | TAB |
| Neuren PharmaceuticalsPublished as Neuren | Corporate partner | ACMGG |
| Neurogene | Meeting sponsor | AES |
| Taysha Gene Therapies | Meeting sponsor | ASGCT |
| Tobii Dynavox | Exhibitor | CEC |
| Anavex Life SciencesPublished as Anavex | Corporate partner | Only IRSF, so far |
| Cerevance | Corporate partner | Only IRSF, so far |
| Citizen Health | Exhibitor | Only IRSF, so far |
| DiamiR | Meeting sponsor | Only IRSF, so far |
| Greenwich Biosciences | Corporate partner | Only IRSF, so far |
| NeuroCores | Meeting sponsor | Only IRSF, so far |
| Newron PharmaceuticalsPublished as Newron | Corporate partner | Only IRSF, so far |
| ObiPublished as Obi Robot | Exhibitor | Only IRSF, so far |
| Smartbox | Exhibitor | Only IRSF, so far |
Sources: 5 published lists, read October 2026
ASCEND National Summit: Our 2026 Exhibitors. Read October 7, 2026. Company exhibitors at the ASCEND 2026 Rett Syndrome National Summit.
ASCEND National Summit: Our 2026 Sponsors. Read October 7, 2026. Company sponsors of the ASCEND 2026 Rett Syndrome National Summit, by level.
Industry Partners: Who We've Worked With. Read October 7, 2026. Drug and gene therapy companies IRSF lists as industry partners it has worked with.
Our Network of Partners: Our Sponsors and Our Supporters. Read October 7, 2026. Companies IRSF lists as sponsors of its educational initiatives and as annual supporters.
Rett Syndrome Scientific Meeting: Our 2026 Sponsors. Read October 7, 2026. Company sponsors of the 2026 IRSF Rett Syndrome Scientific Meeting, by level.
Who backs IRSF's peers, but not IRSF
Companies named publicly by at least one of IRSF's five peer societies, and not found in IRSF's reviewed public records.
| Company | DSF | FSARA | TSC Alliance | DMRF | Peers |
|---|---|---|---|---|---|
| AmgenPublished as Amgen Rare Disease | Named | Defender | 2 of 4 | ||
| Biogen | Core Program Sponsor | Benefactor | 2 of 4 | ||
| Jazz PharmaceuticalsPublished as Jazz Pharmaceuticals logo | Named | Chair’s Circle | 2 of 4 | ||
| AbbVie | Named | 1 of 4 | |||
| Aeovian Pharmaceuticals | Sponsor | 1 of 4 | |||
| AFCO Insurance Premium Finance | Advocate | 1 of 4 | |||
| Alexion Pharmaceuticals | Named | 1 of 4 | |||
| Allied Asset Management | Named | 1 of 4 | |||
| Allied HVACR Services | Advocate | 1 of 4 | |||
| Alta Equipment Group | Named | 1 of 4 | |||
| Amalie Oil Company | Named | 1 of 4 | |||
| Amneal Pharmaceuticals | Advocate | 1 of 4 | |||
| Arborscapes | Advocate | 1 of 4 | |||
| Arrowhead Pharmaceuticals | Named | 1 of 4 | |||
| Beneficial Life Insurance | Defender | 1 of 4 | |||
| Big Timber Cattle Company | Named | 1 of 4 | |||
| Biocodex USAPublished as biocodex logo | Named | 1 of 4 | |||
| Biohaven Pharmaceuticals | Named | 1 of 4 | |||
| Biologics by McKesson | Named | 1 of 4 | |||
| BridgeBio Pharma | Benefactor | 1 of 4 | |||
| Brown & Brown | Named | 1 of 4 | |||
| Cassava Sciences | Chair’s Circle | 1 of 4 | |||
| CEI Constructors | Regional Sponsors | 1 of 4 | |||
| Chemistry Rx | Defender | 1 of 4 | |||
| CM Brown Nurseries | Regional Sponsors | 1 of 4 | |||
| Columbia Food ServicePublished as Columbia Food Service Co., Inc. | Named | 1 of 4 | |||
| CRD Associates | Advocate | 1 of 4 | |||
| CVS Health | Protector | 1 of 4 | |||
| Dei Rossi Marketing | Regional Sponsors | 1 of 4 | |||
| Design Therapeutics | Named | 1 of 4 | |||
| Duncan Real Estate | Named | 1 of 4 | |||
| East River Energy | Named | 1 of 4 | |||
| EisaiPublished as Eisai Logo | Named | 1 of 4 | |||
| El Dorado Holdings | Named | 1 of 4 | |||
| Foley, Baron, Metzger & Juip | Named | 1 of 4 | |||
| Founding FarmersPublished as Founding Farmers Alexandria | Advocate | 1 of 4 | |||
| GD Energy Products | Advocate | 1 of 4 | |||
| Gershow Recycling | Named | 1 of 4 | |||
| Goldman SachsPublished as Goldman Sachs & Co. | Named | 1 of 4 | |||
| GondolaBio | Defender | 1 of 4 | |||
| Named | 1 of 4 | ||||
| Grin Therapeutics | Protector | 1 of 4 | |||
| Huffman & Huffman Brothers-In-Law | Named | 1 of 4 | |||
| Impact HVAC | Named | 1 of 4 | |||
| IpsenPublished as Ipsen Biopharmaceuticals, Inc. | Named | 1 of 4 | |||
| Jim EllisPublished as Jim Ellis logo | Named | 1 of 4 | |||
| Johnson & JohnsonPublished as Johnson & Johnson Family of Companies | Named | 1 of 4 | |||
| K Creative GroupPublished as Norie Knezetic/K Creative Group, Inc. | Named | 1 of 4 | |||
| Keenova Therapeutics | Sponsor | 1 of 4 | |||
| Kendra Scott | Advocate | 1 of 4 | |||
| Knobbe MartensPublished as Knobbe, Martens, Olson & Bear, LLP | Defender | 1 of 4 | |||
| Kriste Branding | Advocate | 1 of 4 | |||
| KS&R | Named | 1 of 4 | |||
| Larimar Therapeutics | Core Program Sponsor | 1 of 4 | |||
| Law Office of George J. Wall | Named | 1 of 4 | |||
| Leon Max | Named | 1 of 4 | |||
| Level Up Drywall | Regional Sponsors | 1 of 4 | |||
| Lexeo Therapeutics | Named | 1 of 4 | |||
| Lindsay Hart | Named | 1 of 4 | |||
| LivaNova | Sponsor | 1 of 4 | |||
| Longboard Pharmaceuticals | Protector | 1 of 4 | |||
| Mallinckrodt Pharmaceuticals | Named | 1 of 4 | |||
| Mane Street Cigars & Lounge | Named | 1 of 4 | |||
| Marinus PharmaceuticalsPublished as Marinus | Named | 1 of 4 | |||
| MassMutual | Named | 1 of 4 | |||
| MassMutual SpecialCare | Sponsor | 1 of 4 | |||
| McManus Lorey Funeral Home | Named | 1 of 4 | |||
| Medford Fast Lube | Named | 1 of 4 | |||
| MedPanel | Advocate | 1 of 4 | |||
| Medtronic | Named | 1 of 4 | |||
| Meritex | Advocate | 1 of 4 | |||
| Merz Therapeutics | Named | 1 of 4 | |||
| Millennium Consultancy USA | Named | 1 of 4 | |||
| MK Real Estate | Advocate | 1 of 4 | |||
| Mossing Spas & More | Named | 1 of 4 | |||
| Motric Bio | Named | 1 of 4 | |||
| NAI DiLeo-Bram & Co. | Named | 1 of 4 | |||
| Neurelis | Benefactor | 1 of 4 | |||
| Neurocrine Biosciences | Named | 1 of 4 | |||
| Nobelpharma | Title Sponsor | 1 of 4 | |||
| Nobelpharma America | Benefactor | 1 of 4 | |||
| Norbert E. Mitchell Company | Regional Sponsors | 1 of 4 | |||
| Notis Professional Services | Named | 1 of 4 | |||
| Odevo US | Advocate | 1 of 4 | |||
| OmniSource | Named | 1 of 4 | |||
| OpenNode | Defender | 1 of 4 | |||
| Pace Window and Door | Named | 1 of 4 | |||
| Paramount, Inc. | Named | 1 of 4 | |||
| Praxis Precision Medicines | Protector | 1 of 4 | |||
| PsychoGenics | Defender | 1 of 4 | |||
| PTC Therapeutics | Named | 1 of 4 | |||
| Raymond James Financial | Named | 1 of 4 | |||
| Redline | Regional Sponsors | 1 of 4 | |||
| Revance Therapeutics | Named | 1 of 4 | |||
| Roya WellnessPublished as Roya Wellness (Bahareh Lazemizadeh) | Regional Sponsors | 1 of 4 | |||
| Rudi's Bar and Grill | Named | 1 of 4 | |||
| Salesforce | Defender | 1 of 4 | |||
| Samsung | Named | 1 of 4 | |||
| Satellite Advertising & Design | Named | 1 of 4 | |||
| Savvy Socks | Regional Sponsors | 1 of 4 | |||
| Servier | Named | 1 of 4 | |||
| SH ExpressPublished as SH Express logo | Named | 1 of 4 | |||
| Shumaker, Loop & Kendrick | Named | 1 of 4 | |||
| Skechers | Defender | 1 of 4 | |||
| Snap-onPublished as Snap-on Tools | Named | 1 of 4 | |||
| Solid Biosciences | Named | 1 of 4 | |||
| Southern Pine Timber Products | Named | 1 of 4 | |||
| Space Cow Media | Advocate | 1 of 4 | |||
| Sparkle Edge Cleaning Service | Named | 1 of 4 | |||
| Stealth BioTherapeutics | Named | 1 of 4 | |||
| Stellar Realty | Named | 1 of 4 | |||
| Stifel Financial | Named | 1 of 4 | |||
| Strickland's Steakhouse | Named | 1 of 4 | |||
| Take-Two Interactive Software | Advocate | 1 of 4 | |||
| The H Group | Named | 1 of 4 | |||
| The Hershey Company | Named | 1 of 4 | |||
| Tom Bercu Presents | Named | 1 of 4 | |||
| Topsy Turvy Brewery | Named | 1 of 4 | |||
| Total Care Rx | Advocate | 1 of 4 | |||
| Upsher-Smith LaboratoriesPublished as Upshire Smith | Chair’s Circle | 1 of 4 | |||
| US Pharma Lab | Named | 1 of 4 | |||
| Vanguard Protex Global | Named | 1 of 4 | |||
| Vesta DesignPublished as Vesta Design/Josh Huskins | Named | 1 of 4 | |||
| Vima Therapeutics | Named | 1 of 4 | |||
| Voyager Therapeutics | Named | 1 of 4 | |||
| Wagner's Market | Named | 1 of 4 | |||
| Wakefern Food Corporation | Named | 1 of 4 | |||
| Wall Development Group | Regional Sponsors | 1 of 4 | |||
| Wall Management | Defender | 1 of 4 | |||
| Waste Connections | Regional Sponsors | 1 of 4 | |||
| Wegmans Food Markets | Named | 1 of 4 | |||
| Wilspec Technologies | Named | 1 of 4 | |||
| Your Bridge Wealth Management | Regional Sponsors | 1 of 4 |
The outside view
The first nonprofit to focus only on Rett syndrome, a parents' cause joined in 2007 by a parents' research foundation, now standing between the families who live with Rett and the companies trying to treat it.
- Consensus
- Build
- Outward
- Operational
Their shape
The Movement
Gathered around a cause, and built to move.
The Movement is mission-led and built to mobilize, organized around changing something in the world. Its gift is passion and external impact, its challenge is turning momentum into something that lasts.
Also reads toward The Frontier and The Village.
Strengths
Not an official page of International Rett Syndrome Foundation. Sociogene does not consult. Everything here comes from public sources, dated and linked. Something wrong here? Tell us what we missed.