rarediseases 2022

Challenges of Living with Rare Diseases

Focusing inside the coordination between medical, social and support services so as to handle the challenges that individuals living with a rare disease and their families round the world confront every day. Although rare disease patients and their families face several challenges, huge progress is being created daily. Most rare diseases don't have any cure; therefore living with a rare infection is associate degree on-going learning expertise for patients and families. Day-by-day, hand-in-hand, along we tend to gift a united voice to advocate for the treatments, care, resources and services we tend to all would like. Managing these care-related tasks aboard their usual daily activities like work, faculty and time off are often difficult.