Family appeals for help over rare diseases

A family which includes the only two people in the UK with a rare genetic disease have urged Scottish politicians to do more to help those suffering from lesser-known diseases.

John Wallace, with children Keir and Rowan. Keir is the UKs only child with Familial Cold Autoinflammatory Syndrome Type 2. Photograph: Ian Georgeson

The Wallace family are dismayed that six months after the start of the 2016 Scottish Parliament MSPs have failed to set up a cross-party group to look at issues associated with rare diseases.

Keir Wallace, nine, is the UK’s only child with Familial Cold Autoinflammatory Syndrome Type 2, a condition that he shares with his mother Laurie.

The disease is caused by a gene mutation which makes the autoimmune system of sufferers stay on when it should be switched off, causing it to attack the sufferer’s body. Those with the condition spend much of their life in pain and, at times, find it difficult to walk.

Yesterday Keir’s father John Wallace said: “We are now six months into our new parliament and it seems the 300,000-strong rare disease community are being totally forgotten by our politicians, as we are still waiting for a cross-party group on rare diseases to be formed. The politicians are just forgetting about it.”

A rare diseases cross-party group was established in the last parliament. Although the official deadline for establishing cross-party groups has been passed, there are plans to re-establish it.

Alastair Kent, director of Genetic Alliance UK, said: “Following the election there was a huge change, so many of the people who were involved in the cross-party group are no longer in the parliament and newly elected MSPs take a bit of time to work out which issues they are going to pick up on.

“Although individually each condition may only affect a very small number of families, if you take them together they are a significant health concern – not just for the families affected but for the health service.”

The SNP’s Bob Doris, the co-convener of the last group, said: “I have arranged for a briefing session in the Scottish Parliament for MSPs to learn more about rare diseases on 29 November. My intention would be to start the formal process of re-establishing the cross-party group at that point.”