RARE Revolution Magazine publishes new impact report – The impact of RARE diseases on sibling experience
London UK, Boston USA, 23rd January 2023 – 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.
Nicola Miller, editor in chief of RARE Revolution Magazine, said:
“Life with a rare disease can undoubtedly be challenging for families, beginning with the road to diagnosis, which is typically long, confusing and exhausting. Worries about health, treatments, finances and the future can dominate. Many rare conditions are life-limiting with complex and degenerative symptoms, and the majority have no effective treatment or cure. Most rare diseases are diagnosed in childhood, and many are genetic. A rare disease diagnosis affects not just the individual but the whole family. It inevitably alters family dynamics and can change the life path a family had planned and set out on. The impact and burden are felt by all.”
“There is very little support for siblings, apart from young carers. I think support needs to be in place for post-18 sibling carers as this is when it really starts to impact the choices they can make for their own lives.” – study participant
While the effects of rare disease on the individual and their parents are perhaps more acknowledged, siblings also carry the weight of rare disease on their shoulders, and their lives are impacted in many ways by the challenges of living in a rare family. They regularly have plans changed, miss out on opportunities, and must respond to a barrage of questions and often unkind comments from their peers, all while accepting the responsibility of caring for, and worrying about, a sibling.
“This report has been created thanks to 52 incredible young siblings, aged 8 to 25, from families affected by rare disease, without whom this work would have been impossible. We would like to thank each participant for their courage and candour in sharing their most personal insights and experiences. Their willingness to broach difficult conversations and share often unsettling aspects of their lives provided us with a rich, first-hand perspective into the unique challenges they face. We feel immense pride in the way these remarkable young people conducted themselves and supported each other during this study by validating their peers’ experiences as they found and shared common ground. We hope the insights within this report will be a launch pad for greater conversation and action around supporting young siblings and carers, and we feel sure that the legacy of their contribution will shape the landscape for future generations of rare siblings.” – Nicola Miller, editor in chief of RARE Revolution Magazine.
Wendy Erler, VP, head of patient experience & insights, Alexion, AstraZeneca Rare Disease said:
“Rare diseases impact those with the diagnosis and everyone around them. The experience siblings have is unique and special, and hearing from those who have a sibling with a rare disease is critical to deeply understand the true rare disease family experience. We are delighted to share this report, with deep gratitude to the young people who participated in it, and look forward to expanding upon this important discussion.”
About RARE Revolution Magazine
RARE Revolution Magazine is an independent not-for-profit publication dedicated to elevating the voice of the rare disease community through its magazine, online presence and social media. It produces high-quality articles to support disease awareness and education across stakeholders, sectors and geographies. Featuring compelling voices and leading emerging conversations, RARE Revolution Magazine plays its part in turning the tide for rare disease.
RARE Revolution Magazine’s community continues to grow virtually and through its global networks and ecosystems. To find out more about joining the #RARERevolution visit rarerevolutionmagazine.com or contact the team at firstname.lastname@example.org
Becky Pender, RARE Revolution Magazine. For media and interview enquiries please email: email@example.com