Declan Noone

[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.

[EHC_Haemophilia @EHC_Haemophilia]

European VWD Awareness Day 2023!
EHC VWD Working Group members Statements. Honest and powerful.
#VWDday2023
Discover the project here: https://t.co/Yk4sVvIDqp

[Declan Noone @DecNoone]

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

[Declan Noone @DecNoone]

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?🤔

[Declan Noone @DecNoone]

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!

[EHC_Haemophilia @EHC_Haemophilia]

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 @DecNoone]

@Amanda_Bok @EHC_Haemophilia @CitrusSuite @Brianhemophilia @ProfMakris @PeyvandiFlora I love the little tests

[Amanda Bok @Amanda_Bok]

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

[Declan Noone @DecNoone]

@EHC_Haemophilia asked to support improved access to life saving treatment today and the story is a tough situation yet again. So for all PwBD, especially children,out there in pain right now, We see you, We hear you, We’re here, working to make the days to come better. #WHD2021

[Declan Noone @DecNoone]

@NunoLop12125273 & Ana Pastor talk about addressing the disparities in delivering equality of care for women in bleeding disorders community and how @AssociacaoAph have made steps to address this in Portugal @EHC_Haemophilia WBD webinar

[Declan Noone @DecNoone]

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

[Declan Noone @DecNoone]

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

[Brian O Mahony @Brianhemophilia]

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

[Declan Noone @DecNoone]

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.

[Amanda Bok @Amanda_Bok]

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!!

[Declan Noone @DecNoone]

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

[Declan Noone @DecNoone]

@Factor8Curtis @Brianhemophilia Fair point @Factor8Curtis 🙂 but if clinicians decide that a death occurs as a result of thrombosis,
they report it.if its bleeding they say unrelated and don't report. From the outside,people see 2 deaths , 1 thrombosis. Totally skews the interpretation of numbers

[Declan Noone @DecNoone]

@DegenaarManon @Brianhemophilia @EHC_Haemophilia Thanks Brian. As always sharing essential scientific information 😆

[Declan Noone @DecNoone]

@Amanda_Bok @EHC_Haemophilia @Brianhemophilia @ProfMakris @a9dph @DegenaarManon @Evelyngrimberg1 @NajaSkouw @thomas_sannie @CratoMiguel @MinetteVen

[Declan Noone @DecNoone]

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.

[Declan Noone @DecNoone]

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😄

[Declan Noone @DecNoone]

@a9dph @physio_paul @EAHADnews @a9dph, with the one gif you severely diminish @Amanda_Bok dancing skills and massively inflate mine. Miss our #EHC2020 dinner and dancing

[Declan Noone @DecNoone]

@physio_paul @EAHADnews @physio_paul so nice to see this highlighted. @EHC_Haemophilia surveys have been collecting how lacking physio is for a decade. Patients at #EHC2020 last night emphasised the need for this to be more than just on paper.

[Declan Noone @DecNoone]

@EHC_Haemophilia @DegenaarManon Thank you Jo, Jack, Karin, Frank, Donal, Manon for making last night such a success. These are stories we need to hear to understand the work that is needed improve care and access.