Für den Inhalt der Angaben zeichnet die Projektleitung verantwortlich.
Dieses von der Gebert Rüf Stiftung geförderte Projekt wird von folgenden weiteren Projektpartnern mitgetragen: Access, Universität Basel
Données de projet
Numéro du projet: GRS-027/08
Subside accordé: CHF 365'000
Durée: 01.2009 - 08.2010
Pilotprojekte, 1998 - 2018
Direction du projet
4051 Basel (Schweiz)
- robert.derham@checkorphan. org
Description du projet
The mission of CheckOrphan is to establish an interactive and dynamic platform for all rare, orphan and neglected diseases. This strategy allows visitors to be updated daily on all the latest news and interact with people internationally. Often there is not a large concentration of individuals with a given rare disease in close proximity to each other. Through blogs, forums and other interactive tools, individuals from around the world can learn, network and interact via a virtual workplace, where they can come together from remote locations to work on projects and bring about change. The main target groups CheckOrphan are: individuals affected by rare diseases, their family members, physicians, researchers, industry, the media, and government policy makers.
CheckOrphan will aid the efforts of organizations and individuals involved with and affected by rare diseases:
- Educate and inform visitors by aggregating news, events and research developments about rare diseases onto one platform to help create a larger voice for rare diseases
- Increase direct investment in the rare diseases sector by better communicating the need for research funds, diagnostic solutions and treatments for rare diseases to society
- Create a social network platform (online community)
- Empower users to plan, act and initiate change through a novel software technology that will give them a virtual office to globally work on projects, events and more
- Consolidate the latest information on treatments, prevention, funds and support for rare diseases onto one platform to help create a stronger voice and economic front
- Direct people to clinical trials, support organizations and physicians
- Provide researchers and physicians with a platform to promote their work and needs
- Promote emerging research about prevention and lifestyle changes that can help prevent the onset of a rare disease, or ameliorate a person’s current state
Quelles sont les particularités de ce projet?
Gebert Rüf Stiftung financed the Swiss-based project CheckOrphan because it proposed a unique and innovative way to provide solutions for the rare disease community on an international level. The financial support has helped to build a unique platform that offers new advantages to the rare disease community. In addition, CheckOrphan will promote all Gebert Rüf Stiftung funded projects that relate to rare diseases.
CheckOrphan has had significant success at building a global platform for rare diseases. Currently the CheckOrphan offers the following functioning features which also allow login visitors to use to submit content:
- Daily news – CheckOrphan is the leading source for news about rare diseases. The news is divided into three categories: Treatment, Research and People.
- Events – the largest event calendar for rare diseases
- CheckOrphan NewsFlash – the first news broadcast about rare and neglected diseases
- Databases – Academia, Companies, Government, Hospitals/Clinics, Organizations
- iWish – where all users can submit their ideas and wishes for the rare disease community
- 7000+ rare disease pages – each page is dynamic with content from CheckOrphan’s multiple databases
- Online Sponsonship Platform – individuals and organizations can elect to support CheckOrphan while increasing exposure for their activities or a particular rare disease
- Groups – all interested parties can form groups, which will also be able to evolve into working groups through the virtual workplace
CheckOrphan also has established the following partnerships for the online platform:
- GetREEL Health – high-resolution media exchange, virtual workplace and professional networking platform
- Children’s Rare Disease Network – CRRN uses CheckOrphan news and information and CheckOrphan supports their Global Genes Project
- eBay GivingWorks – will auction off CheckOrphan products (donated goods, rare disease page sponsorships and CheckOrphan features)
- Google – provides CheckOrphan with $10,000 worth of Google ads per month
- FDA – provides access to clinical trials, new treatments and new rare diseases
- Nature – access to journals and will offer their NatureJobs platform
- Vitals.com – access to evaluated physicians
- DoubleCheckMD – where users can cross-reference medication with their symptoms
- PLoS – will give CheckOrphan users more access to research publications
- NIH/NLM – offers CheckOrpphan research publications
Revue de presse
Personnes participant au projet
Tatsuo Satoh, Managing Director, tatsuo.
Ian Sowers, Head of Marketing & Fundraising, ian.
Dernière mise à jour de cette présentation du projet 21.12.2018