Now at BlueSky: @pnhsupport.bsky.social. Paroxysmal nocturnal haemoglobinuria (PNH) - PNH Support is a registered CIO (no. 1161518) supporting patients.
England and Wales
Joined June 2015
- Tweets1.6K
- Following524
- Followers463
- Likes2.2K
PNH Support retweeted
📢And also next week don't miss the #ThursdayWebinar on "Clinical usefulness of next-generation sequencing”
👩🏫Provided by Noemi Roy
👉Register now! eurobloodnet.eu/education/th……
… #ERNeu #ERNs #HealthUnion #EU4Health #ShareCareCure #haematology
PNH Support retweeted
🧡 On October 10th, we celebrated World Mental Health Day! 🧡 Living with PNH is challenging, but you are not alone. Together, we create a supportive community where every patient is heard and valued. Let's keep raising awareness and breaking the stigma. 🌟 #MentalHealth
PNH Support retweeted
Maria Piggin at yesterday's talk on the role of patient support groups.
Fabulous talks, chaired by Dr Noemi Roy.
Supportive audience of clinicians: 'One of the best sessions of #bsh2024'
#BetterTogether
PNH Support retweeted
Marking Rare disease day today in the the national PNH team at Leeds. Noting support, education, research & treatments #PNH #RareDiseaseDay2024 @leedshaem @PNHScotland @PNHSupport @AplasticAnaemia @eurordis @ERNEuroBloodNet @OncologyLeedsTH @LeedsHospitals
PNH Support retweeted
I can’t wait to share more photos from @rarediseaseday over the weekend. The greatest group of friends helped me raise funds for @AplasticAnaemia, @PNHSupport & @MintridgeFDN. We are so, so close to our target. #RareDiseaseDay
donate.giveasyoulive.com/fun… – at East Midlands, England
PNH Support retweeted
The new EU disability card will serve as a proof of disability status anywhere in the EU. Using the card, people with disabilities should have access to the same special conditions and preferential treatment as residents of the country they visit: ec.europa.eu/social/main.jsp…
PNH Support retweeted
The 2nd Academic CML-CAB took place today in Frankfurt, Germany bringing together some representatives of the #patientcommunity & researchers to discuss current efforts & ideas to work together towards a common path in benefit of #CMLpatients. Looking forward to what is to come!
PNH Support retweeted
And again👇. @ZPWLC points out how to involve patients in R&D is published, clear and just needs to be implemented by industry to benefit all stakeholders #nothingaboutuswithoutus – at Frankfurt on the Main, Germany
PNH Support retweeted
#Qol tools are not usually fit for purpose including EQ-5D and EORTC QLQ C30 #EUROACT @ZPWLC #patientadvocacy #EHA2023 – at Frankfurt on the Main, Germany
PNH Support retweeted
The baby slide: right hand picture self explanatory. @ZPWLC The only people qualified to say what they think and value is patients themselves #patientadvocacy #nothingaboutuswithoutus #EHA2023 – at Frankfurt, Hesse
PNH Support retweeted
#QoL and #symptoms #EHA2023 session - how do we convince our stakeholders to use relevant #PROMs? Items of PROM content needs to come from patients including patient research partners. @lichterzellen
PNH Support retweeted
Poster on clinical, humanistic and economic burden of #PNH co-authored by @PNHSupport and @lichterzellen @leedshaem including the QLQ AA/PNH 54 #QoL which has insights relevant to patients #EHA2023
PNH Support retweeted
Are there different sciences? Why do patients, pharma industry and academics have difficulties developing research joining knowledge and interest.Francesco Pignatti from EMA on lack of collaboration in trial development.#EHA2023
PNH Support retweeted
The Better Together Alliance Project is running a Mindfulness program to help deal with the emotional burden of living with the conditions supported by the Alliance charities. The course begins on 28 June – see if you can join this unique opportunity.
ow.ly/uOz150OFpiq
PNH Support retweeted
Maria Piggin of @PNHSupport @GlobalPnh speaking on global access of treatment at #EHA2023 together with Regis Peffault De La Tour
PNH Support retweeted
Dr Jens Panse reminds the audience that 80% of #PNH patients have no access to #treatment = significant #inequality As #patients we collectively lobby to address this where we can @lichterzellen @aamdsif @pnhaacontact @hpn_asociacion @PNHCanada @AAundPNHeV @ERNEuroBloodNet – at Frankfurt on the Main, Germany
PNH Support retweeted
So excited about this webinar & talking about the amazing work our seven small but mighty charities are doing together @AplasticAnaemia @CharitySdsuk @fanconihope @DC_Action @DBA_UK @PNHSupport @CAnaemiaNetwork with thanks to @TNLComFund #SmallCharityWeek #SmallCharitiesTogether
Mon 19 June 10.30am join Claire Baggott from the Better Together Project & Ellie Dawes from @AplasticAnaemia as they discuss fundraising & the spirit of working together.
Book your place today bit.ly/SCW_AAT
#SmallCharityWeek
#SmallCharitiesTogether
ALT Background colours in blocks: yellow, blue, green, purple & pink. Photograph of Claire Baggott in round frame (white lady with long dark brown hair) Wording overlaid: Small Charity Week. Claire Baggott Better Together Project Spirit of Partnership Mon 19 June @10.30am
ALT Background colours in blocks: yellow, blue, green, purple & pink. Photograph of Ellie Dawes in round frame (white lady with short croped blonde hair) Wording overlaid: Small Charity Week. Ellie Dawes The Aplastic Anaemia Trust Spirit of Partnership Mon 19 June @10.30am