High Court to hear challenge over alleged discrimination against children with rare genetic conditions

Two children with rare genetic conditions have been granted permission to take their legal challenge against the Government to the High Court in a landmark case that could have significant implications for disability rights and the provision of public services.

The families argue that the Down Syndrome Act 2022 unlawfully discriminates against people with other genetic conditions who have similar health, educational and social care needs, by providing statutory protections specifically for individuals with Down syndrome.

The challenge has been brought on behalf of a 14-year-old girl living with Pitt-Hopkins Syndrome who requires specialist education and one-to-one support, and a toddler with Williams Syndrome, a rare condition that can affect development, learning and physical health.

Their families say both children face challenges comparable to those experienced by many people with Down syndrome and require similar support from healthcare, education and social care services.

The case concerns the Down Syndrome Act 2022; legislation which requires public authorities to have regard to guidance designed to meet the needs of people with Down syndrome. The claimants argue that by focusing solely on Down syndrome, the law treats people with other comparable genetic conditions differently without objective justification.

The claim argues that the legislation breaches Article 14 of the European Convention on Human Rights, which prohibits discrimination, because there is no objective justification for treating individuals with Down syndrome differently from those with other comparable genetic conditions.

The case raises questions over whether the protections linked to the Act should apply more broadly to people with comparable genetic conditions.

The High Court has now granted permission for the case to proceed, with a hearing due to take place on 17 November 2026.

Ryan Westwell, a public law expert at Irwin Mitchell representing the families, said: 

"This is an important case about equal treatment and whether people with genetic conditions that create similar challenges and support needs should be afforded the same recognition and consideration under the law.

 

"Our clients are not seeking to diminish the rights of people with Down syndrome. They simply want to ensure that other children and adults with equally complex genetic conditions are not left behind.

 

"The High Court’s permission decision means these issues will now receive detailed judicial scrutiny, in a case that could have important implications for families affected by rare genetic conditions.”

The family of the girl with Pitt Hopkins who is anonymous said: "As parents, our focus is simply on making sure our child has the support they need to thrive. We know first-hand the challenges of navigating healthcare, education and care services, and we believe families in similar situations should be treated equally, regardless of the name of their child's condition.

"We're not questioning the support provided to people with Down syndrome. We simply want other children with complex genetic conditions, who face many of the same challenges, to receive the same consideration and recognition.

"We hope this case will help bring greater fairness for families like ours and ensure no child is left behind because of the particular diagnosis they happen to have."

Williams Syndrome is believed to affect around 1 in 18,000 people and an estimated 300 people diagnosed with Pitt Hopkins Syndrome. Down Syndrome is believed to occur in around 1 in 1000 births in the UK.