Anger over lack of progress six months after rare disease strategy launched
Rare Diseases Ireland chief executive Vicky McGrath said she was 'deeply concerned' by the survey findings. Picture: Moya Nolan
“We are effectively on our own.” That is how one parent summed up supports for children with rare diseases as families mark six months since the launch of a new national strategy.
Families and advocates are now calling for faster and more practical progress on the commitments made in that plan.
Despite early enthusiasm around the strategy, Rare Diseases Ireland says families have yet to see meaningful change.
About one in 17 people in Ireland live with a rare disease. Four in 10 experience poor access to healthcare services, according to a survey carried out this month.
Some 39% rated their “ease of access to health services” as bad or very bad. Only 30.5% rated access as good or very good.
One person said: “The constant fight for everything is overwhelming and mentally draining.”
Another person said of their daughter: “it seems because she is so unwell, she has become invisible.”
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One respondent said: “As someone who works in the HSE, when I was hospitalised and diagnosed with a rare disease it completely shattered me and what I thought I knew. The reality is so much worse.”
Other people commented on the impact of their illness: “Medical costs are astronomical and medical cards are too difficult to access.”
Rare Diseases Ireland said any positive comments related to individual staff members rather than services.
One person said: “GP and neurologist are excellent… we are supported by a good team in the community.”
The survey of 177 people found that most respondents were pessimistic about whether the National Rare Disease Strategy 2025–2030 would improve their lives.
Some 60% said they were not optimistic about its potential impact, while just 8% said they were definitely optimistic about the changes to come.
Rare Diseases Ireland chief executive Vicky McGrath said she was “deeply concerned” by the findings.
She was closely involved with developing the strategy and told the Irish Examiner last year that she had felt hopeful for change.
This week, however, she said: “Words like 'disjointed', 'on our own', 'overwhelming', and 'invisible' should give all of us pause.
"No one living with a rare disease in Ireland should feel invisible within our health system.”
Ms McGrath added: “No family should be left navigating fragmented services without co-ordination or clear pathways.
"And no patient should face excessive medical costs while also battling complex, multi-system conditions.”
Ms McGrath noted the six-month anniversary of the national strategy. She said it "provides a strong framework, but what patients and carers now need is visible, timebound implementation".
Ms McGrath called for practical steps to bring policy into people’s lives. They include:
- Faster pathways for access;
- Co-ordinated multi-disciplinary care;
- An awareness campaigns;
- Streamlined financial supports.
Saturday is Rare Disease Day with events taking place around the country this weekend.
Shannon Airport, Killarney Town Hall, the Rock of Cashel, and the Kindred Spirits sculpture in Midleton, Co Cork, are among the sites lighting up purple to mark the occasion.
- Niamh Griffin, Health Correspondent
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