Assessing the supportive care needs of parents of children with rare diseases in Ireland.

Purpose: Rare diseases are individually uncommon yet collectively prevalent. They affect over 300,000 people in Ireland, with 50-70 % impacting children. This study explores the supportive care needs of parents caring for children with rare diseases in Ireland, utilising a validated Parental Needs Scale for Rare Diseases (PNS-RD).

Caregiver-Reported Economic Impacts of Pediatric Rare Diseases-A Scoping Review.

: Rare diseases are conditions that are individually rare but collectively common. These diseases can incur significant direct and indirect costs with a combination of high medical expenses, loss of income, and additional non-medical costs. Despite this, research into the economic cost for families of children with a rare disease is lacking.

A qualitative exploration of children's lives with rare diseases.

Background: Rare diseases encompass a diverse group of debilitating and sometimes life-threatening conditions that affect a small percentage of the population, posing a significant public health challenge. Despite their rarity, around 70% of these diseases afflict children, yet limited research has focused on their experiences. This study aimed to gain insights into the day-to-day challenges children living with rare diseases face.

The economic impact of living with a rare disease for children and their families: a scoping review protocol.

Background: Rare diseases are an often chronic, progressive and life-limiting group of conditions affecting more than 30 million people in Europe. These diseases are associated with significant direct and indirect costs to a spectrum of stakeholders, ranging from individuals and their families to society overall. Further quantitative research on the economic cost for children and their families living with a rare disease is required as there is little known on this topic.