Tag Archives: rare disease

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

rare-disease-day-logoYesterday 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.

Posted in Op-eds | Also tagged and | 2 Comments
Advert



Recent Comments

  • George Thomas
    I'm struggling to see why this person has joined the LD's other than to stay in local politics? Community leaders who care about the town could also describe th...
  • Helen Dudden
    Dear Ed, other countries leave us behind with moving on Transport and green issues. France and EDF energy has been raised by 4%, Spain free travel in some ar...
  • Jeff
    Fiona 11th Aug '22 - 9:20am: The Scottish “Greens” proved their lack of environmental credibility when they campaigned for the 2014 White Paper o...
  • expats
    Jon Tandy......“Ultimately, the Labour Party I joined 35 years ago is gone. The influence of Corbyn and Momentum is still present like a nasty hangover, espec...
  • Fiona
    The Scottish "Greens" proved their lack of environmental credibility when they campaigned for the 2014 White Paper on independence that required maximising the ...