One Missing Enzyme

@catthesailor

Campaigning for first ever life changing treatment to be funded by the NHS - Video -

Northern Ireland
mpssociety.co.uk
Joined January 2013
17 Photos and videos Photos and videos

Tweets

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  2. retweeted
    Sep 9

    is for people with disabilities in Ireland to give them a voice to say where is and isn't accessible.

    6 retweets 7 favorites
  3. retweeted
    Aug 16

    Academic piece about the trial and NICE

    Squashed dreams & rare breeds: drug funding impact on life & death now FREE VIEW
    8 retweets 3 favorites
  4. retweeted
    Sep 2

    Relief as health bosses indicate ‘yes’ to Morquio drug

    2 retweets 2 favorites
  5. retweeted
    Sep 2

    Finally - some hope for Morquio patients

    6 retweets 3 favorites
  6. retweeted
    Sep 2 Wales, United Kingdom

    Here is how the looks tomorrow:

    12:40 PM - 2 Sep 2015 · Details
    15 retweets 8 favorites
  7. retweeted
    Sep 2

    very proud of my wonderful friend Angela for keeping up the fight!!!

    View conversation Hide conversation 4 retweets 2 favorites
  8. retweeted
    Sep 2

    New hope for Otley boy with ultra rare disease. That and the rest of the day's news for on headlines at 6:10

    4 retweets 4 favorites
  9. retweeted
    Sep 2

    Health chiefs look set to approve the life-changing drug Vimizim, needed by 6 year old Sam Brown from Otley who has an ultra-rare disease.

    5 retweets 4 favorites
  10. retweeted
    Sep 3

    More great news for .

    Health chiefs look set to approve the life-changing drug Vimizim, needed by 6 year old Sam Brown from Otley who has an ultra-rare disease.
    3 retweets 2 favorites
  11. retweeted
    Sep 3

    Just done interview with Radio Aire. For anyone in Yorkshire the good news regarding Vimizim should be on their hourly news this afternoon.

    4 retweets 2 favorites
  12. retweeted
    Sep 3

    Family of Sam Brown, 6, from Otley who has Morquio have welcomed news that the drug he needs could now be funded by the NHS. More at 1330

    6 retweets 12 favorites
  13. retweeted
    Sep 7

    pls help Scotland reverse the decision so they support MPSIV a rare disease, but this is assisted suicide

    11 retweets 4 favorites
  14. retweeted
    Sep 7

    dreadful decision today to say no to the funding of Vimizim for Morquio Syndrome in Scotland. The fight is on!

    10 retweets 3 favorites
  15. retweeted
    Sep 7

    Disappointed that Scotland have said no to Vimizim for Morquio. I call on to overturn this decision.

    , , and 3 others
    3:39 PM - 7 Sep 2015 · Details
    6 retweets 5 favorites
  16. retweeted
    Sep 4

    Relief for Angela Paton as health bosses indicate 'yes' to Morquio drug.

    , , and 7 others
    10:12 AM - 4 Sep 2015 · Details
    9 retweets 4 favorites
  17. retweeted
    Sep 3

    . leaning towards approving 's drug but this isn't job done, so campaign continues!

    View summary Hide summary 9 retweets 6 favorites
  18. retweeted
    Sep 3

    not sure I trust it but we will see! Could be a selection process at play!

    View conversation Hide conversation 1 retweet 1 favorite
  19. retweeted
    Sep 2

    If you suffer from or related disease, or are a carer, don’t forget that our Advocacy Team are here to help:

    1 retweet 1 favorite
  20. retweeted
    Sep 2

    Greats news coming out from England over NICE recommendation of Vimizim on the NHS.

    , , and 5 others
    3:49 AM - 2 Sep 2015 · Details
    9 retweets 3 favorites
  21. retweeted
    Sep 2

    Could this finally be the light at the end of a very long and very dark tunnel?

    NICE draft guidance conditionally recommends Vimizim for treatment of Morquio
    8 retweets 2 favorites

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