Rare Disease Day gives us the opportunity to be part of a global call to policymakers, researchers, companies and healthcare professionals to involve patients in research. More investment in research is need into Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) along with other uncommon and rare conditions. Research is required to develop diagnostic tools, treatments and cures as well as improve social care for patients and their families.
PSP and CBD impact the whole family. It is difficult to diagnose, the numbers are smaller than the more common conditions but we need answers. Progressive conditions with no treatment and no cure are particularly difficult and families want more research and greater access to research at local and international level.
Families and friends are out there actively raising awareness and funds for research into these conditions in Ireland. We need more investment in research at national and international level to understand the conditions find effective treatments and hopefully a cure to these rare and devastating conditions.