Coffin #WFHCongress2024 . The WFH SDM tool is now available in english, french and spanish and shortly in japanese, dutch and german

My poster at #WFHCongress2024 on a clearinghouse for materials produced by national and international patient organisations and others including ISTHand ASCGT. Curated by a group of PWH. Over 50 documents currently and will be updated regularly

Countries need an efficient and effective national procurement system, minimising handling/distribution fees. They should encourage competition, achieve clinical consensus and strategically plan treatment purchase. 8/8

Availability of Gene Therapy and future rebalancing agents add more opportunity for competition and choice. As rebalancing agents can be used for Haemophilia A, B with/without inhibitors, will some countries look at purchasing one of these to treat all if cost effective ? 7/8

My #WFHCongress2024 talk on Treatment access for low and middle income countries. Barriers include lack of government priority, registries, high cost and policy barriers possibly including WHO EML policy on Cryo and proposed ISTH guidelines 1/8

The IrishHaemophiliaSoc team (minus Roisin) enjoying the sunshine during a coffee break #WFHCongress2024

Poster I was lead author on #WFHCongress2024 Ad board including 6 PWH who had recieved Gene Therapy. Educational needs identified-eligibility, comparison with other therapies,expectation management, dosing, short and long term follow up

Lovely to meet friends Dr. Mai and Ms. Tran from Vietnam #WFHCongress2024 with my colleague Debbie Greene IrishHaemophiliaSoc We had a wonderful 9 year collaboration with Vietnam. Delighted they are now using some Emicizumab and soon FIX Gene Therapy clinical trial WFH

We are always happy for members to sign up to our weekly online physio-exercise and pilates classes!

If you would like to join us for one of these classes or to learn more, please contact [email protected].

The IHS offers accommodation to members travelling up to Dublin for an appointment in St. James's Hospital or CHI Crumlin. The apartments are for those attending clinics or receiving treatment and for their immediate family.

See haemophilia.ie/.../services-a… for more information.

The Irish delegation of staff and board members at the #WFHWorldCongress2024 in Madrid.

Congratulations to the NCC at St James's Hospital and the team at CHI at Crumlin for receiving the 2022 HTC twinning awards with Jordan, here at #WFHCongress2024 .

Beatrice Nolan Niamh O'Connell

Skinner #WFHCongress2024 on the inexplicable and unsafe WHO decision to put PR Cryo on the core essential medicines list with non PR Cryo as an alternative. Safe CFCS relegated to the complementary list. This is crazy, retrograde and will cause morbidity and mortality

The WFH Global NMO training concluded yesterday after 2 days of plenary lectures, interactive workshops on project planning & budgeting & opportunities for NMOs everywhere to share their stories & successes, as well as their challenges.

On now to WFH World Congress!

Haemophilia information stand at Cork University Hospital today with haemophilia nurse specialists Ann Marie and Norma, #WorldHaemophiliaDay IrishHaemophiliaSoc

Great story. Hurling is a tough physical sport which would have been totally contraindicated for someone with severe haemophilia 10 or even 5 years ago. Current treatment makes this possible IrishHaemophiliaSoc WFH EHC_Haemophilia

Some of the team in ⁦⁦Cork University Hospitals⁩ raising awareness of bleeding disorders on world haemophilia day ⁦IrishHaemophiliaSoc⁩

Raising awareness for paediatric Haemophilia and Allied bleeding disorders #WorldHemophiliaDay #ChildrensHealthIreland #EquitableAccessforAll #PaediatricHaemophiliaTeam Beatrice Nolan Saad Ahmed Ruth Hunter Nolan Yotsmori Imelda Kelly Bridin Brady Paula Loughnane

Happy #WorldHaemophiliaDay from all the team at the Irish Haemophilia Society!

Today, we are delighted to launch our new Introduction to Haemophilia booklet, which you can view online at this link:

haemophilia.ie/wp-content/upl…

We have many events planned for the rest of 2024, including:

- Ageing Conference (17-19 May)
- VWD Information Day (20 July)
- Mild Haemophilia Information Day (14 September)
- October Members' Conference (18-20 October)

More information to follow. ℹ️