Advancing the education of patients, their families and interested health professionals. Only ~30 diagnosed patients in Scotland
Scotland
Joined October 2011
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We have a new website! Full of helpful, friendly PNH info for patients and health professionals - check it out pnhscotland.org.uk
We are delighted to say that the Scottish Medicines Consortium (SMC) has approved the drug Ravulizumab (Ultomiris) for the treatment of PNH. This drug is the 8 weekly infusion version of Eculizumab.
scottishmedicines.org.uk/abo…
The SMC allowed PNH Scotland to put forward the patient voice through their Patient and Clinician Engagement (PACE) process.
We are very grateful to the SMC for enabling us to explain what life with PNH is like and how this drug would improve the lives of those requiring infusions.
#pnh #pnhdisease #nhsscotland #nhs #smc #pnhscotland #anaemia
PNH Scotland retweeted
We follow these PNH support groups around the world on Twitter. Do you know of any others?
@PNHScotland @PNHCanada @PNHSANZ @pnhaacontact @aamdsif
#pnh #pnhdisease
I have been contacted by healthcare consultants, BresMed Health Solutions, who are conducting a survey on behalf of Alexion Pharmaceuticals. To aid future submissions to the Scottish Medicines Consortium, Alexion... facebook.com/pnhscotland/pos…
"Ra Pharmaceuticals Announces Positive Interim Results from Phase 2 Study of RA101495 SC in Paroxysmal Nocturnal... fb.me/5sFajBm7V
Shout out to the team at @jem_digital for creating our beautiful website and patient information booklets!
This is the number one issue PNH Scotland is working to change #RareDiseases #ultraorphindrugs #raredisease #pnhdisease nitter.cf/rareconnect/status/916…
Approved breakthrough orphan medicines are not made available to #raredisease patients because of their high price.
PNH Scotland retweeted
Heard about Rare Disease Day 2018? Find out how you can get involved on 28 February: ow.ly/MEeZ30fxrZi #RareDisease
It was lovely to meet Alistair from @ScottishHD at the #PRideSCO awards last night, and chat about rare diseases #rarediseasesarenotrare
OPINIONS NEEDED!
Exciting news everyone, Lesley and Morgan are currently working on the new PNH Scotland website.... fb.me/3vVsvuHAI
Looking forward to seeing everyone at Monklands today. Take care on the roads and pavements - they're really slippy. Lesley.
Thank you Hector and family for all your hard work - £4300 raised for PNH Scotland! Lovely day at Monklands... fb.me/8eYrL0Wl2
Lesley is jetting off on holiday, so Morgan will be running the patient group at Monklands solo tomorrow! She is... fb.me/463SVdw5w
A huge thanks to Hector, Melanie, Debbie and family for an amazing evening at the Linlithgow Rose Social Club on... fb.me/1cWABm4D9
Looking forward to the fundraiser tomorrow evening. Many thanks to Debbie and Melanie for all their hard work in... fb.me/3Usgezspu
The Genetic Alliance launched a Patient Charter on 'Access to Medicines for Rare Conditions in Scotland' on... fb.me/4xGJy6L5e