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Declan Noone

@DecNoone

Great work by a dedicated vWD group @EHC_Haemophilia to raise awareness on this important day. Diagnosis, recognition of bleeding and impact on quality of life can and need to be improved for the vWD community.

European VWD Awareness Day 2023! EHC VWD Working Group members Statements. Honest and powerful. #VWDday2023 Discover the project here: ehc.eu/vwd-awareness-…

EHC_Haemophilia's tweet image. European VWD Awareness Day 2023!
EHC VWD Working Group members Statements. Honest and powerful.
#VWDday2023
Discover the project here: ehc.eu/vwd-awareness-…
EHC_Haemophilia's tweet image. European VWD Awareness Day 2023!
EHC VWD Working Group members Statements. Honest and powerful.
#VWDday2023
Discover the project here: ehc.eu/vwd-awareness-…


In Warsaw, for @EHC_Haemophilia with @a9dph to talk about need for 5 year plan to develop Haemophlia Comprehensive care centre's. Lots of agreement on needs, and support on urgency for center coordination, telehealth, MDT teams and a national registry

DecNoone's tweet image. In Warsaw, for @EHC_Haemophilia with @a9dph to talk about need for 5 year plan to develop Haemophlia Comprehensive care centre's. Lots of agreement on needs, and support on urgency for center coordination, telehealth, MDT teams and a national registry

Just of a St.Patricks Day call with @EHC_Haemophilia members who are coordinating care for all people with a bleeding disorder coming into their countries. Right now trying to figure out if I'm prouder to be Irish or part of this amazing community?🤔


In these especially difficult times for patients in the Ukraine and those fleeing to their neighbouring regions, we hope that all pharmaceutical companies will find avenues to ensure that life-saving medicinal products reach those most in need!

We are shocked, saddened and deeply concerned for the safety and health of our community members in Ukraine and the region. We very much hope that the situation will de-escalate as soon as possible! The EHC and our broader community is ready to support as we can.



Declan Noone reposted

Come one, come all for a REFRESH-ing evening of Big Ideas and Live Music as we launch a new way of working - all together ! @EHC_Haemophilia @LaraBloom @ProfMakris @Brianhemophilia @DecNoone @NajaSkouw

✨Exciting news ! Join us for the official launch of the EHC Think Tank🧠 a new initiative that seeks to engage multiple healthcare stakeholder perspectives in co-designing long-term trajectories of positive future change!👉 ehc.eu/events/ehc-thi…



Sitting back, watching the @EHC_Haemophilia Women and Bleeding Disorder seminar. Who ever said there is nothing on TV anymore! Tune in for the nxt hour for engaging presentations

DecNoone's tweet image. Sitting back, watching the @EHC_Haemophilia Women and Bleeding Disorder seminar. Who ever said there is nothing on TV anymore! Tune in for the nxt hour for engaging presentations

Watching the public meeting on Prophylactic therapies by ICER in the US. Very interesting report and discussion.

Participating today as a panelist at the public meeting to review the ICER (USA) report on the Effectiveness and Value of Valoctocogene Roxaparvovec and Emucizumab for Haemophilia A without inhibitors. I will not be posting updates. Meeting report will be published

Brianhemophilia's tweet image. Participating today as a panelist at the public meeting to review the ICER (USA) report on the Effectiveness and Value of Valoctocogene Roxaparvovec and Emucizumab for Haemophilia A without inhibitors.
I will not be posting updates. Meeting report will be published


Last night of #EHC2020 was so much fun and a week of super discussions. Thank you everyone for attending and connecting with us. Thank you @Amanda_Bok and the entire team that made it all possible. See you all in Zagreb.

And #EHC2020 is a wrap! W/ what better ending drink than this! So proud of @EHC_Haemophilia staff & volunteers who do beautiful, intelligent & utterly humane work! See you at #EHC2021 Zagreb, 1-3 Oct!!

Amanda_Bok's tweet image. And #EHC2020 is a wrap! W/ what better ending drink than this! So proud of @EHC_Haemophilia  staff & volunteers who do beautiful, intelligent & utterly humane work! See you at #EHC2021 Zagreb, 1-3 Oct!!


Last workshop of #EHC2020. @DougallDentist discusses considerations for people with bleeding disorders when being treated for dental procedures.

DecNoone's tweet image. Last workshop of #EHC2020. @DougallDentist discusses considerations for people with bleeding disorders when being treated for dental procedures.

The @EHC_Haemophilia #EHC2020 discussed the importance of shared decision making this week. Tune in tonight to see what it should look like between a patient and clinician when we work together to improve our own quality of life. Looking forward to it Jacob and Peter.


Wating for #EHC2020 talk on new therapies to begin. Inspired by @physio_paul & Nathalie Roussel's talk on Monday about pain and importance of movement will be incorporating ankle mobility and balance into my viewing. @katekhair socks are for you😄

DecNoone's tweet image. Wating for #EHC2020 talk on new therapies to begin. Inspired by @physio_paul & Nathalie  Roussel's talk on Monday about pain and importance of movement will be incorporating ankle mobility and balance into my viewing. @katekhair  socks are for you😄

This ever happen to anyone else? When it does, the @EHC_Haemophilia #EHC2020 show must go on and it sure did. Excellent discussion from patients highlighting the need for control and confidence in their care and treatment, which directly effects their quality of life.

DecNoone's tweet image. This ever happen to anyone else? When it does, the @EHC_Haemophilia  #EHC2020  show must go on and it sure did.  Excellent discussion from patients highlighting the need for control and confidence in their care and treatment, which directly effects their quality of life.

This is going to be a great session with top class speakers and two wonderful hosts. #EHC2020 is currently at 999 registered participants !🙏tell friends, family, to join us for the rest of the week for the biggest EHC conference ever.

Tune in ⏰18.00 hrs CET for the second day of the #EHC2020 Conference. Tonight we look at individualization of treatment with a special focus on treatment strategies for newborn and aging people with RBD. More info and registrations at ehc.eu

EHC_Haemophilia's tweet image. Tune in ⏰18.00 hrs CET for the second day of the #EHC2020 Conference. Tonight we look at individualization of treatment with a special focus on treatment strategies for newborn and aging people with RBD. More info and registrations at ehc.eu


Another step towards @EHC_Haemophilia conference 2020. Just finished recording a podcast with 3 wonderful speakers, @LenValentino1, Fergal McGroarty and Eva Funding on telemedicine. Walk,Listen and then come to hear youth debaters go head2head on the topic


Getting into @EHC_Haemophilia Conference Mode with @HappySofficial and a bit of recording. Another step closer, registration is open (ehc.eu/events/ehc-con…) & look forward to seeing old friends online.

DecNoone's tweet image. Getting into @EHC_Haemophilia Conference Mode with @HappySofficial and a bit of recording. Another step closer,  registration is open (ehc.eu/events/ehc-con…) & look forward to seeing old friends online.

Haemophilia organisations issue statements on 2 deaths in the #AT132 AAV8-based gene therapy trial for #XLMTM. ehc.eu/8385/ & news.wfh.org/joint-wfh-and-…


Great to see a clinical trial in PUP's/MTP's to fully understand the impact in children

Gallia Levy today announced the HAVEN7 trial that Roche are starting. This will be in #hemophilia PUPs who will be treated for 1 year with a 7 year follow up. #WFHVirtualSummit

ProfMakris's tweet image. Gallia Levy today announced the HAVEN7 trial that Roche are starting. This will be in #hemophilia PUPs who will be treated for 1 year with a 7 year follow up. #WFHVirtualSummit


Congratulations to Latifa Lamhene on winning the Frank Schnabel Volunteer Award @wfhemophilia virtual summit 20202. Well deserved and a true inspiration ( youtu.be/_EKd45oS_K4)


With the @wfhemophilia virtual summit coming up, check out @EHC_Haemophilia latest edition of Novel Products Newsletter as a reminder of the latest developments over the last 6 months. Makes a nice combo for abstract book (onlinelibrary.wiley.com/toc/13652516/2…)

Fresh off the press! A new edition of our New Product Newsletter is now available at bit.ly/2C0CKPj - Read the latest developments on novel treatments for rare bleeding disorders



My calendar kindly reminded me I should be landing in KL for @wfhemophilia 2020 congress. Sad that we are unable share this time with local NMO and volunteers. The Virtual Summit though is happening this Sunday! Register today! ow.ly/FOnW50zSa8G #WFHVirtualSummit


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