Rare diseases can create significant challenges in diagnosis, treatment access and affordability. Care for Rare is HWF's initiative focused on strengthening pathways for rare disease patients—from identification and diagnosis to treatment support and access.
Learn MoreCare for Rare brings together patient support, diagnostic access, healthcare connectivity and public-private collaboration to improve the rare disease care pathway.
Support treatment for identified rare disease patients, including reimbursement of treatment costs where applicable.
Facilitate access to subsidised genetic testing and genome sequencing to support diagnosis and patient identification.
Develop tele-genetic clinics as spokes connected with Centres of Excellence, helping extend access to specialist genetic expertise.
Support the enrolment of identified rare disease patients into appropriate managed access programmes run by pharmaceutical organisations through a public-private partnership model.
Work in collaboration with State Governments to develop and roll out mass screening and patient identification programmes.
Support the development and future roll-out of a facial identification application to support rare disease screening and identification.
"Earlier identification. Better access. Stronger support for people living with rare diseases."
