The impact of RARE disease on sibling experience impact report, undertaken by RARE Revolution Magazine and supported by Alexion, AstraZeneca Rare Disease, aims to give a voice to RARE siblings. The report shares the personal insights of young people living with RARE embedded into the fabric of their family life, who want—and deserve—to be recognised, supported and heard.
The study comprises insights from 52 RARE siblings across two age categories: 23 participants aged 8–16 and 29 participants aged 17–25, alongside facilitating carers, captured in June and July of 2022. Participants from the UK and USA represent over 35 different rare conditions. Through the invaluable insights provided by these RARE siblings, the report highlights the impact siblings experience in their education, family life and relationships and makes recommendations to support and nurture this unique group of young people. Insights and recommendations can serve as a useful guide to all organisations operating in a support capacity within rare disease—aiding their short and long term strategic aims for whole family support.