Open Platform for Rare Diseases (OPFORD) is conceived as a digital support and online resource center for patients, parents and caregivers, clinicians and researchers. OPFORD provides networking support and information repositories for rare diseases A-Z. Vital resources available on time (including diagnostic tools and calculators) enable and empower patients take better care of themselves and improve their knowledge of the disease. By connecting patients to authentic curated resources, OPFORD empowers them with on-time information and thereby reduce the time wasted in searching for information.
Vision, Mission & Values
Vision: Create a world-class digital platform to connect rare disease patient communities, parents and caregivers to improve diagnosis, treatment and care of rare diseases.
Mission: Optimize the use of technology to enable global sharing of best practices, knowledge and learning and care for rare disease patient communities.
Values: OPFORD’s driving values are collaboration, communication and education for all stakeholder communities in rare diseases. OPFORD’s values reflect the need of the hour for rare disease communities in solving problems together. Communicating vital information and accessing educational resources on rare diseases.
Objectives: A Knowledge Hub for Rare Diseases
OPFORD’s objectives include:
- a robust, online platform for creating and curating high-quality digital content resources for rare diseases
- connecting patients and families to clinicians, healthcare providers, genetic counsellors, healthcare payers, registries and clinical trials, pharma and biotech
- educational resources (CMEs, MOOCs, articles, self-learning modules) for patients
- mapping disease-specific clinicians, geneticists, tertiary care specialists and researchers for patient access
- crowdfunding platform for supporting treatment and cure for rare disease patients.
OPFORD will move beyond all boundaries and institutions to create the best-possible resources for rare diseases bringing together experts across institutions. Clinicians, patients and researchers are encouraged to share open data to improve existing practices and create a knowledge bank of best practices for each disease.