Syngap Elternhilfe E.v.
Syngap Elternhilfe e.V. is a German non-profit parent-led self-help association, founded in 2016 in Krefeld, that supports families affected by the rare SYNGAP1 genetic syndrome through peer support, crisis intervention, awareness campaigns, and patient-led research infrastructure including the EURAS consortium and PATRE registry.
- Company typePrivate
- Founded2016
- HeadquartersKrefeld, Germany
- Headcount1–10
- GTM typeB2C
- OfferingServices
What Syngap Elternhilfe E.v. does
Syngap Elternhilfe e.V. is a German non-profit patient advocacy organization (eingetragener Verein) founded in 2016 and headquartered at Virchowstraße 80, Krefeld. The association is a self-help group of parents serving parents and caregivers of children and adults diagnosed with SYNGAP1 syndrome, an ultra-rare genetic neurodevelopmental disorder first identified in 2009. It is the only dedicated SYNGAP1 patient organization in Germany, representing more than 140 documented German cases out of approximately 1,600 known cases worldwide, and it acts as the patient-voice node within the SYNGAP Global Network spanning more than 20 countries.
The organization's product portfolio is built around three pillars: community support, public outreach, and research facilitation. Community-facing services include a WhatsApp-based SYNGAP emergency telephone for crisis de-escalation, peer-support networking, family symposia on clinical studies and ASO therapies, free loan of adaptive bikes (Krefelder Inklusionsräder), and a METACOM playground communication-board project (Kommunikation für alle) with 15+ boards installed. Research and infrastructure work centers on the EURAS consortium (a Horizon Europe-funded, €8.5M, 16-partner, 8-country network for neurodevelopmental RASopathies that Syngap Elternhilfe co-initiated) and the PATRE SYNGAP1 patient registry with roughly 500 enrolled patients. The annual Rare Diseases Run, initiated by the organization, has raised more than €180,000 across 33-44 patient organizations since 2022.
The business model is donation- and grant-funded, with no commercial revenue. Income streams comprise individual donations and membership fees, project grants from Aktion Mensch, GKV joint self-help subsidies, AOK health-insurance project funding, EU Horizon Europe disbursements through EURAS, corporate-giving programs (Förderpenny, ALDI Süd), an inherited €63,845 donation from the dissolved Austrian partner Leon and Friends e.V., and passive affiliate income via the Gooding shopping platform. Operations are run by an all-volunteer board of seven parents, supported by a medical-scientific advisory board, and the organization is recognized as tax-exempt (gemeinnützig) by Finanzamt Krefeld since 2021.
Syngap Elternhilfe E.v. firmographics
Firmographics- Name
- Syngap Elternhilfe E.v.
- Legal name
- Syngap Elternhilfe e.V.
- Website
- https://syngap.de
- Company type
- Private
- Founded year
- 2016
- Operating status
- Operating
- Headcount range
- 1–10 employees
- Short description
- Syngap Elternhilfe e.V. is a German non-profit parent-led self-help association, founded in 2016 in Krefeld, that supports families affected by the rare SYNGAP1 genetic syndrome through peer support, crisis intervention, awareness campaigns, and patient-led research infrastructure including the EURAS consortium and PATRE registry.
- Ownership category
- akta.pro rank
Syngap Elternhilfe E.v. industry classification
Industry- Product category
- Patient advocacy and rare disease support services
- NAICS
- Other Individual and Family Services (624190), Social Assistance (624), Services for the Elderly and Persons with Disabilities (62412)
- SIC
- Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)
- akta.pro primary industry
- Rare Disease & Special Needs Support Organizations (BPAGACAM)
- akta.pro secondary industries
- Disability Services & Independent Living Support (BPAGACAG), Family & Parenting Support Services (BPAGAEAC)
Keywords
Where Syngap Elternhilfe E.v. is headquartered
LocationHeadquarters
- HQ city
- Krefeld
- HQ country
- Germany
- HQ region
- Europe
Offices1 record
Markets served
Syngap Elternhilfe E.v. 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 Membership Fees: As a charitable association (gemeinnütziger Verein), Syngap Elternhilfe e.V. is primarily funded through donations from individuals, foundations, and corporate giving programs. The organization also receives membership fees. They do not generate commercial revenue from products or services.
- Institutional Funding and Grants: The organization receives project-based funding from institutional sources including Aktion Mensch (lottery funding for accessibility and inclusion projects), the GKV joint self-help promotion (statutory health insurance subsidies), AOK (German health insurance provider for running projects), and EU funding through the EURAS Project (Horizon Europe, Grant Agreement 101080580). They also received a significant donation of 63,845.62 EUR from dissolved partner organization Leon and Friends e.V.
- Affiliate/Shopping Platform (Gooding): Through the Gooding platform, the organization receives automatic donations (premiums) when supporters make online purchases at participating shops (2,000+ online stores) or book travel. No additional cost is incurred by supporters. This provides a passive income stream from everyday online shopping.
Go-to-market motion1 record
Distribution channels5 records
Marketing channels6 records
Syngap Elternhilfe E.v. product offering
Product offeringCore offering
Syngap Elternhilfe e.V. is a parent-led non-profit self-help association that supports families affected by the rare SYNGAP1 genetic syndrome. It provides free peer support, crisis intervention via a WhatsApp-based emergency telephone, family networking, awareness campaigns, accessibility lending services (inclusion bikes, communication boards, educational boxes), and patient registry/research facilitation through the EURAS project. The organization does not sell products or services; all offerings are free of charge and supported through donations, membership fees, grants, and sponsorships.
Product overview
SYNGAP Elternhilfe e.V. is a German non-profit patient organization (eingetragener Verein) founded in 2016 and headquartered in Krefeld, operating as a self-help group for families affected by the rare SYNGAP1 genetic syndrome. The organization does not offer a software product or technology platform; instead, it delivers a portfolio of community support programs and research facilitation services organized around three pillars: public outreach (Öffentlichkeitsarbeit) to increase SYNGAP1 awareness and accelerate diagnoses; patient support work including counseling, family networking, workshops, and crisis intervention; and active research promotion through the EURAS project and PATRE patient registry. Key named offerings include the annual Rare Diseases Run awareness event, the Inklusionsboxen educational lending program, Krefelder Inklusionsräder adaptive bicycle lending service, SYNGAP Notfall-Telefon peer crisis support, Kommunikation für alle METACOM playground symbol boards, and research projects on EEG diagnostics and emotional development assessment.
Differentiator
Problem solved
Functional benefit
Products and services
- Rare Diseases Run Annual virtual pan-European running event held around Rare Disease Day to raise awareness and funds for rare disease organizations; participants run, walk, or roll at their own locations with proceeds distributed to participating patient organizations.
- Inklusionsboxen Free lending program providing educational materials and inclusive tools to kindergartens and schools, available in variants for early childhood/primary education (children's books, sensory materials, inclusive toys) and secondary schools (youth literature and rare disease background information).
- Krefelder Inklusionsräder (Krefeld Inclusion Bikes) Free lending service providing two special tandem bicycles — VanRaam VeloPlus (with wheelchair platform) and OPair (with detachable wheelchair) — to families with disabled children in the Krefeld area, addressing the financial barrier of specialized mobility equipment.
- SYNGAP Notfall-Telefon (SYNGAP Emergency Phone) WhatsApp-based peer crisis support service for SYNGAP1 families during acute situations such as sensory overload or behavioral crises; registered families send crisis messages and trained volunteer members respond with de-escalation support calls.
- Kommunikation für alle (Communication for All) Accessibility project installing METACOM symbol playground communication boards at schools, kindergartens, and playgrounds to enable communication for non-speaking children and those with limited German language skills, in partnership with Autismusverlag.
- EURAS Projekt / PATRE SYNGAP1 Patientenregister Pan-European research network for neurodevelopmental RASopathies initiated by Syngap Elternhilfe, coordinating international research collaboration and operating the PATRE patient registry that collects genetic and medical data from SYNGAP1 patients worldwide to support clinical trials and therapy development.
- EEG für SYNGAP1 Research project exploring the use of mobile EEG devices to reduce the stress of epilepsy monitoring for SYNGAP1 children, who often cannot tolerate traditional EEG equipment due to sensory sensitivity and autism.
- SEED (Skala der emotionalen Entwicklung – Diagnostik) Research project investigating the emotional development of SYNGAP1 children, aimed at explaining challenging behaviors and providing approaches for therapeutic support.
Quantifiable outcome
- Nearly 500 patients enrolled in PATRE patient registry, enabling participation in research and clinical trial preparation
- +3 more outcomes
Companies that use Syngap Elternhilfe E.v.
Customer profileNamed customers2 records
Segments3 records
Ideal customer profiles3 records
Syngap Elternhilfe E.v. technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Syngap Elternhilfe E.v. partnerships and signals
Strategic signalPartnerships
13 partnerships are on record, tiered core and minor.
- ERN ITHACA (European Reference Network)coreEuropean Reference Network for rare congenital malformations and intellectual disability. Syngap Elternhilfe e.V. is represented in the ePAGs (European Patient Advocacy Groups) Patient Board. Verena Schmeder and Marcos Mengual Hinojosa serve as patient representatives for SYNGAP1 since 2024.
- SYNGAP Global NetworkcoreInternational network officially launched in 2018, connecting SYNGAP representatives from more than 20 countries (Australia, Germany, Finland, France, UK, India, Italy, Japan, Canada, Netherlands, Austria, Poland, Switzerland, Slovenia, Spain, USA). Works under the motto 'Act locally – Connect globally' to strengthen national patient organizations and provide resources to SYNGAP families worldwide.
- EURORDIS - Rare Diseases EuropecoreEuropean umbrella organization for rare disease patient organizations. Syngap Elternhilfe e.V. is a member, connecting the German SYNGAP1 community to the broader European rare disease advocacy movement.
- ERN EpiCAREcoreEuropean Reference Network for epilepsy care. Given that approximately 84% of SYNGAP1 patients develop epilepsy, this partnership is crucial for improving care pathways for affected individuals.
- Kindernetzwerk e.V.minorGerman network organization for children with chronic conditions and disabilities. Membership provides access to resources and advocacy support within the German healthcare system.
- Bundesverband Selbsthilfe Körperbehinderter e.V. (BSK)minorGerman federal association for people with physical disabilities. Membership supports advocacy for inclusion and accessibility for SYNGAP1-affected individuals.
- Epilepsie Bundes-Elternverband e.V.coreGerman national parent association for epilepsy. Given the high prevalence of epilepsy in SYNGAP1 patients, this partnership provides important resources and support for families dealing with seizure disorders.
- Pro Rare AustriaminorAustrian alliance for rare diseases. Connects Syngap Elternhilfe e.V. with the Austrian rare disease community and supports cross-border collaboration.
- EURAS Project ConsortiumcoreEUropean network for neurodevelopmental RASopathies. The EURAS project is a 48-month research initiative (2023-2027) with ~8.5M EUR budget involving 16 partners from 8 countries. Syngap Elternhilfe e.V. initiated the project together with their medical advisory board and serves as a full partner. Coordination is at University Hospital Erlangen under Prof. Dr. Anna Fejtová. The project is funded by Horizon Europe (Grant Agreement 101080580).
- Leon and Friends e.V. (Austria)minorAustrian SYNGAP1 patient organization that dissolved in late 2025. Remaining funds of 63,845.62 EUR were donated to Syngap Elternhilfe e.V. to support two EEG research projects. The organizations collaborated on SYNGAP1 advocacy before the dissolution.
- Laufen macht glücklich GbRcoreEvent partner for the Rare Diseases Run. Provides running packages including starter bags, shirts, medals, and certificates for participants. Enables the annual virtual running event that has raised over 180,000 EUR for rare disease organizations since 2022.
- Autismusverlag (Autism Publisher)corePublisher of METACOM symbols used in the playground communication boards and other communication materials. Provided digital versions of playground boards for the 'Kommunication für alle' project, making symbols available for non-verbal children and people with limited German language skills.
- Medipoint (medical equipment supplier)minorSupplied the VanRaam special needs bikes (VeloPlus and OPair) for the Krefeld Inclusion Bikes project. Provided competent and friendly service during delivery in November 2025.
Scale indicators7 records
Recent moves6 records
Expansion highlights6 records
Syngap Elternhilfe E.v. competitors and assessment
Company assessmentBroad incumbents
- ACHSE (Allianz Chronischer Seltener Erkrankungen): German umbrella organization for ~130 rare disease patient organizations. Syngap Elternhilfe operates under this umbrella and is highly comparable as a member organization, though ACHSE serves a federation role rather than a single-disease focus.
- NORD (National Organization for Rare Disorders): US-based umbrella organization for rare disease patient advocacy. Offers a comparable federation model with member disease-specific organizations, though at much larger scale and serving as a policy and research funding aggregator.
- EURORDIS – Rare Diseases Europe: European umbrella organization for rare disease patient organizations. Syngap Elternhilfe is a member. EURORDIS is a broader policy and federation body that complements the disease-specific advocacy work Syngap Elternhilfe performs.
Others
- Leon and Friends e.V. (dissolved): Austrian SYNGAP1 patient organization that dissolved in late 2025, with remaining funds donated to Syngap Elternhilfe. Previously a direct peer and now a cautionary comparator demonstrating the fragility of small national rare-disease patient organizations.
Direct peers
- Noonan Syndrome Foundation: Patient advocacy organization for Noonan Syndrome, another RASopathy within the EURAS consortium. Serves as a sibling organization with parallel mission, research advocacy, and patient-organization structure.
- CFC International: International patient advocacy organization for Cardiofaciocutaneous Syndrome, a RASopathy covered by the EURAS project alongside SYNGAP1. Comparable as a small rare-disease patient organization co-participating in the same EURAS research consortium and serving a similarly small patient population.
- SYNGAP1 Foundation: The US-based SYNGAP1 patient advocacy organization and part of the SYNGAP Global Network. Directly comparable as a sibling rare-disease patient advocacy organization focused on the same SYNGAP1 syndrome, with similar mission of family support, research funding, and patient registry.
Emerging players
- Tuberous Sclerosis Alliance: US patient advocacy organization for tuberous sclerosis, a rare genetic neurological disorder with autism/epilepsy comorbidity profile similar to SYNGAP1. Comparable as a more mature rare-disease patient organization that has successfully built research infrastructure and clinical trial partnerships that Syngap Elternhilfe aspires to replicate.
Regional players
- Kindernetzwerk e.V. German network organization for children with chronic conditions and disabilities. Partner of Syngap Elternhilfe and a comparable parent-led advocacy organization for German-speaking families navigating rare pediatric conditions.
- Epilepsie Bundes-Elternverband e.V. German national parent association for childhood epilepsy—a core comorbidity of SYNGAP1 (~84% of patients). Already a strategic partner of Syngap Elternhilfe and directly comparable in mission focus (parent-led epilepsies/disabilities support, German-language services).
Market position
Strengths4 records
Weaknesses4 records
Competitive moat5 records
Key risks5 records
Key highlights6 records
Customer concentration
Syngap Elternhilfe E.v. social profiles
Digital presenceSyngap Elternhilfe E.v. financial estimates
Financial estimateRevenue estimate
Valuation estimate
Syngap Elternhilfe E.v. leadership team
Management profileNumber of profiles
Profiles7 records
Syngap Elternhilfe E.v. funding detail
Funding detailFunding overview
Funding rounds
Investors
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Syngap Elternhilfe E.v. M&A and investment
M&A and investmentM&A
Investments
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Frequently asked questions about Syngap Elternhilfe E.v.
What does Syngap Elternhilfe E.v. do?
Syngap Elternhilfe e.V. is a parent-led non-profit self-help association that supports families affected by the rare SYNGAP1 genetic syndrome. It provides free peer support, crisis intervention via a WhatsApp-based emergency telephone, family networking, awareness campaigns, accessibility lending services (inclusion bikes, communication boards, educational boxes), and patient registry/research facilitation through the EURAS project. The organization does not sell products or services; all offerings are free of charge and supported through donations, membership fees, grants, and sponsorships.
Is Syngap Elternhilfe E.v. a public or private company?
Syngap Elternhilfe E.v. is a private company. It is classified as nonprofit foundation owned and is currently operating.
When was Syngap Elternhilfe E.v. founded?
Syngap Elternhilfe E.v. was founded in 2016. It employs 1 to 10 people.
Where is Syngap Elternhilfe E.v. based?
Syngap Elternhilfe E.v. is headquartered in Krefeld, Germany, in the Europe region.
How does Syngap Elternhilfe E.v. make money?
Three revenue lines are on record. Donations and Membership Fees are the primary driver. The others are institutional Funding and Grants and affiliate/Shopping Platform (Gooding).
Who are Syngap Elternhilfe E.v.'s main competitors?
Broad incumbents on record are ACHSE (Allianz Chronischer Seltener Erkrankungen), NORD (National Organization for Rare Disorders) and EURORDIS – Rare Diseases Europe. Leon and Friends e.V. (dissolved) is listed as an others. Direct peers are Noonan Syndrome Foundation, CFC International and SYNGAP1 Foundation. Tuberous Sclerosis Alliance is listed as an emerging player. Regional players are Kindernetzwerk e.V. and Epilepsie Bundes-Elternverband e.V..
Does Syngap Elternhilfe E.v. have an API?
No public API is recorded for Syngap Elternhilfe E.v..
What industry is Syngap Elternhilfe E.v. in?
Syngap Elternhilfe E.v.'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 BPAGACAG, Disability Services & Independent Living Support. Its NAICS code is 624190 and its SIC code is 8300.