Only 13 per cent of people who claim to have an awareness of the term “rare disease” could correctly identify a condition, a survey has revealed.
The results of the survey reveal a disparity between awareness and understanding of rare diseases in Ireland.
According to the National Rare Diseases Office (NRDO), rare diseases affect around 6 per cent of the population in the Republic, accounting for at least 300,000 individuals.
While the Ipsos MRBI survey revealed a lack of understanding of rare diseases, it revealed that there is a strong interest about the subject.
While 84 per cent of respondents claimed to have some awareness of the term “rare disease”, only 13 per cent of those who indicated awareness of the term could correctly identify a condition classified as a rare disease.
Despite these misunderstandings, the survey revealed a call for increased attention to rare diseases, with 82 per cent of all respondents agreeing that these conditions need to be taken more seriously.
Additionally, 69 per cent expressed an interest in learning more about rare diseases.
The survey findings comes as a new rare disease awareness campaign, “I Am Number 17”, is being launched on Wednesday in Dublin by Minister for Health Stephen Donnelly.
Cian, a four-year-old from Naas, Kildare, lives with NARS1, an ultra-rare neurological condition only discovered in 2021.
Cian’s journey with NARS1 began at the age of eight months when he started missing milestones, but he was not diagnosed until he was two.
Despite the struggles that come with his condition, Cian’s vibrant spirit remains undimmed.
A ball enthusiast, he loves to play football, interact with people, and has a great love of being read to.
Cian’s diagnosis with NARS1 has been a challenging, and oftentimes lonely, journey for his family, including parents Ross and Caitriona.
It has required adjustments, acceptance, and resilience.
Cian’s story is shared with the hope of raising awareness about NARS1 and other rare diseases.
The McCarthy family said that the journey with a rare disease could be “less isolating” if there was greater public awareness and understanding.
They also feel that changing the public mindset “ever so slightly” would be a game-changer for people living with rare diseases.
Ross McCarthy said their experience of caring for a child with a rare disease is “hopeful”, “optimistic”, “learning”, and “determined”.
The campaign was initiated and funded by Takeda, a global leader in pharmaceutical research and development, in partnership with Rare Diseases Ireland (RDI) and Rare Ireland.
It features 17 “changemakers” – individuals from all over Ireland living with a rare disease – who are sharing their stories to promote better understanding and awareness of rare diseases in Ireland.
The campaign title, “I Am Number 17”, reflects the fact that one in 17 people in Ireland will be affected by a rare disease at some point in their lives.
The campaign will spotlight and share the lived experiences of these individuals, putting recognisable and relatable faces to the statistics.
The changemakers have been photographed for an exhibition by Julien Behal which will be on public display from February 8th at The CHQ building in Dublin.
This exhibition is designed to celebrate the changemakers at the heart of this campaign.
One of those featured is activist and sports journalist Joanne O’Riordan, who was born with Tetra-amelia syndrome, a disorder characterised by the absence of all four limbs.
She said: “I am happy to lend my voice to the ‘I am Number 17’ campaign to raise awareness and increase understanding of rare diseases.
“As someone living with a rare disease, my journey in the world of sports has taught me the power of visibility and representation.
“We are not defined by our conditions, but they do shape our experiences. It’s time that the rare disease community sees themselves reflected on and off the field.
“I hope by sharing our stories, those living or caring for someone with a rare disease feel seen, heard, and supported.”
Speaking at the launch, Shane Ryan, general manager at Takeda Ireland said: “At Takeda, we are committed to improving the lives of patients with rare diseases.
“The ‘I Am Number 17’ campaign is an important step in raising awareness of rare diseases and we were proud to partner with RDI and Rare Ireland on this initiative.”
Laura Egan, of the family support group Rare Ireland, said: “Rare diseases can be devastating for patients and their families.
“The ‘I Am Number 17’ campaign is an opportunity to give a voice to those living with rare diseases and to raise awareness of the need for more research and support.”
Vicky McGrath, chief executive of Rare Diseases Ireland, said: “Rare diseases are a significant public health issue in Ireland.
“The ‘I Am Number 17’ campaign shines a light on the lived experiences of those living with rare diseases.
“It provides not just insight into the experiences of the 17 Changemakers, but also tells us about their hope, dreams and aspirations. There is much we can learn from them.”
Mr Donnelly said the campaign was an important step in raising awareness of rare diseases and the impact conditions have in Irish society.
“I would like to commend the 17 changemakers today who are wonderfully captured in the photo exhibition,” he added.
“Their individual experiences are so important in fostering a better understanding of these conditions which are far more common than many may think.”
