Part of the debate – in the Senedd at 3:15 pm on 26 February 2020.
Some years ago, I met Carolyn, a truly inspirational woman who went on to tell me that she was a SWAN. Slightly taken aback, I asked her to explain that, and that was when I began to really understand the challenges faced by people who have rare diseases and undiagnosed conditions, also known as syndromes without a name, hence SWAN.
Building awareness of rare disease is important, because one in 20 people will live with a rare disease at some point in their life. Despite this, a substantial number of rare diseases are undiagnosed, and a substantial proportion are without cure or effective treatments to delay the progress of the condition.
This Saturday, 29 February, is a rare day, it is an anomaly, and Rare Disease Day has been held on the last day of February since 2007 with the specific aim of raising awareness about rare diseases and the impacts on patients' lives. We marked this day yesterday with a reception here in the Neuadd.
But I would like to take this opportunity today to pay tribute to those who work so hard in undertaking research into these diseases, and to the Welsh Government for the funding that they provide for this research: Dr Graham Shortland, who leads the rare disease implementation group, and Professor Keir Lewis, who heads Wales Orphan and Rare Lung Diseases—I've got their badge on today—are the lead physicians who are at the front line of this treatment and research into rare diseases, and are much loved and appreciated by the patients they deal with. We are very lucky to have them working for us in the Welsh NHS.
This Saturday—Rare Disease Day—please spend a moment and think about those with rare diseases and undiagnosed conditions. They need to know that they're not alone.