Living with a Rare Disease

More than 6000 different rare diseases have been recognized to date, specifically influencing the everyday life of more than 30 million individuals in Europe alone. The mind boggling nature of rare diseases, combined with constrained access to treatment and administrations, implies that relatives are frequently the essential wellspring of solidarity, support and nurture their friends and family. Regularly constant and incapacitating, uncommon illnesses have huge repercussions for the entire family. Living with an uncommon illness turns into an everyday learning background for patients and families. In spite of the fact that they have diverse names and distinctive side effects, uncommon illnesses affect the day by day lives of patients and families in comparative ways. Most uncommon ailments have no cure, so living with an uncommon ailment is a progressing learning knowledge for patients and families. Documentaries on motivational living stories are accessible amid this gathering session.

More than 6000 different rare diseases have been recognized to date, specifically influencing the everyday life of more than 30 million individuals in Europe alone. The mind boggling nature of rare diseases, combined with constrained access to treatment and administrations, implies that relatives are frequently the essential wellspring of solidarity, support and nurture their friends and family. Regularly constant and incapacitating, uncommon illnesses have huge repercussions for the entire family. Living with an uncommon illness turns into an everyday learning background for patients and families. In spite of the fact that they have diverse names and distinctive side effects, uncommon illnesses affect the day by day lives of patients and families in comparative ways. Most uncommon ailments have no cure, so living with an uncommon ailment is a progressing learning knowledge for patients and families. Documentaries on motivational living stories are accessible amid this gathering session.

  • Access to orphan drugs
  • Improve the safety of your medicines
  • Patient advocates involvement
  • Compassionate use
  • Orphan medicines regulation
  • Orphan medicines designation

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