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Contact publishes new rare conditions research on Rare Disease Day 2019

Thursday 28th February 2019

Today is Rare Disease Day 2019, which takes place on the last day of February every year to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.

The theme of Rare Disease Day 2019 is "Bridging health and social care". The day is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease. Find out more about Rare Disease Day 2019.

Counting the Costs research into families of children with rare conditions

Today we're publishing new research, as part of our Counting the Costs campaign, into the family finances of those whose child has a rare condition.

Of the 2,772 responses to our Counting the Costs survey, 17% said their child had a rare condition. 80 per cent of those say they have gone without something in the last year.

While the findings are similar to the wider population of disabled children, higher levels of children with rare condition are going without therapies, equipment, food and heating.

  • 28 per cent are going without essential therapies (compared to 26 per cent overall).
  • 25 per cent of disabled children are going without specialist equipment or adaptations (compared to 19 per cent overall).
  • 26 per cent are going without food (compared to 24 per cent overall).
  • 24 per cent are going without heating (compared to 20 per cent overall).
  • 20 per cent of parents of children with a rare condition said their child's condition had worsened as a result of going without the basics (compared to 26 per cent overall).
  • 63 per cent of parents say going without has made them unwell (compared to 60 per cent overall).

You can read the full Counting the Costs 2018 Rare Conditions Report [PDF].

We call on the government to plug the funding gap and we welcome Rare Disease Day 2019 calls

Una Summerson, our Head of Policy, says: "As disability and care costs rise, while financial support and local services have dropped away, the consequences for children with rare conditions is clear. 

"Going without the essentials - because these are not luxuries - is leading to increased ill health for both these children and their parents. It is truly distressing to hear children with rare conditions are going without essential therapies and equipment and are unable to make vital visits to the GP and hospital.

"That's why we welcome the call on Rare Disease Day 2019 for better communication between health and social care services. We also call on the government to plug the gap on funding for health and social care services by setting up a disabled children's fund as recommended by the Disabled Children's Partnership."