Tag Archives: rare disease

Rare diseases are not so rare, but are rarely well-researched

By Mary Reid | Tue 1st March 2016 - 1:52 pm

Yesterday was Rare Disease Day, although I missed the opportunity to write about it here. It does happen every year, in spite of it being on Leap Day this time.

But the report today that linked the Zika virus to an increased risk of developing Guillain-Barré syndrome has brought rare diseases back into the limelight. Rare diseases and disorders are defined as those which affect fewer than 1 in 2000 people, and there are over 6000 conditions that qualify.

And, counter-intuitively, a lot of people do suffer from rare diseases, just because there are so many of them. It is estimated that 3.5 million people in the UK have a rare disease, and half of them are children.

Eric Avebury was a great champion of rare diseases, and I enjoyed some stimulating email conversations with him about it after he wrote this post. He suffered, and eventually died from, a rare form of leukemia, which must have sparked his interest in rare diseases, although he was such a wonderful campaigner for all sorts of minority issues, from caste to gay asylum seekers.