Twitter | Search | |
AKU Society
Alkaptonuria (AKU) or Black Bone Disease, causes severe osteoarthritis, heart disease & other serious health problems. Help us find a cure.
7,918
Tweets
1,115
Following
1,517
Followers
Tweets
AKU Society 20h
Microsoft, Takeda, take on rare diseases in children with report, pilots
Reply Retweet Like
AKU Society 21h
Navy base walking team raised £3,300 for charities. This is amazing. Well done to all involved.
Reply Retweet Like
AKU Society retweeted
healx May 20
Today marks the start of ! There's an action-packed programme ft. lots of great speakers. Here in Cambridge we're particularly looking forward to the -related events hosted by and .
Reply Retweet Like
AKU Society May 20
Our patient support manager, Lesley, and AKU patient and trustee, Tony, are at this week. Come say hello, they are at stand C31
Reply Retweet Like
AKU Society May 20
It is today, in 2012 our consortium found out it was successful in £8 million funding to begin our clinical trial. 5 years on we have finished our trial and we are hopeful the drug nitisinone will be licensed as a result!
Reply Retweet Like
AKU Society May 20
Research is incredibly important especially for those living with a in getting future treatment. Our clinical trial would not had happened if our patients did not participate
Reply Retweet Like
AKU Society May 20
This article is about Joshua McCarthy who has pachygyria, a rare and life-limiting brain condition and his experiences living with a . Have you had similar experiences living with a rare disease or helping someone with one?
Reply Retweet Like
AKU Society May 17
Come join us at our 'Stand Up to AKU' comedy night. This year we are hosting the night at the in the centre of on Sunday 9th of June. Tickets are only £10 so follow this link to buy them! all funds go to help patients with
Reply Retweet Like
AKU Society retweeted
Genetic Alliance UK May 17
We are thrilled to announce that our Chief Executive, Dr Jayne Spink, has just been elected to the Board of ! Congratulations !
Reply Retweet Like
AKU Society May 17
Well done Rick! One of the most hard working people in Cambridge!
Reply Retweet Like
AKU Society May 17
Jayne Spink from takes to the stage for her presentation as a candidate for the Board of Directors. Good luck Jayne!
Reply Retweet Like
AKU Society retweeted
Rare Diseases Europe May 16
The EURORDIS Membership Meeting 2019 begins today! We are welcoming over 200 of our members in Bucharest to network, share and learn over the next two days of workshops at
Reply Retweet Like
AKU Society May 16
Ciaran is in sunny Bucharest today for the membership meeting. As always, make sure you say hi if you see him.
Reply Retweet Like
AKU Society May 16
is an exciting prospect for us at the AKU Society, we wish in the near future that our patients can have gene therapy to ultimately cure AKU
Reply Retweet Like
AKU Society May 16
Our CEO, Nick Sireau, was on BCC News last night and discussed how rare disease patients a misdiagnosed by doctors with psychiatric disorders instead. Nick says this is "not good enough." Follow this link (6:38) to watch his segment on
Reply Retweet Like
AKU Society May 15
Definitely recommend this interview with the incredible hero and recipient of the AAA Basmajian Award.
Reply Retweet Like
AKU Society retweeted
European Journal of Human Genetics May 14
Need an update on clinical features of ? Check out this large cohort study, which demonstrates a novel genotype-phenotype correlation.
Reply Retweet Like
AKU Society May 15
I have a . This is my hope for the future of medicine
Reply Retweet Like
AKU Society retweeted
NHS England May 14
It's . Have you been meaning to speak to a friend, colleague or someone in your family about ? This is a great opportunity to have that chat. If you or someone you know needs support, find out where you can access it:
Reply Retweet Like
AKU Society May 14
We are all finished with travel now. Thanks though!
Reply Retweet Like