Challenges of Living with a Rare Diseases

Focusing within the coordination between medical, social and support services in order to handle the challenges that people living with a rare disease and their families around the world confront each day. Even if rare disease patients and their families face many challenges, enormous progress is being made every day. Most rare diseases have no cure, so living with a rare infection is an on-going learning experience for patients and families. Day-by-day, hand-in-hand, together we present a united voice to advocate for the treatments, care, resources and services we all need. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

 

  • Patient attrition
  • Diagnosis
  • Developing and using orphan medicinal products
  • Access the treatment

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