The annual VHI Women's Mini Marathon is approaching and we are asking anyone who plans to take part in this event to please consider fundraising for us at the IHS!

We can send out t-shirts and sponsorship cards. If you want more info, contact Nina Storey on [email protected].

Happening tomorrow! Last chance to register!

#VWDunited #VWDtogethere #beVWDaware

📢 Exciting News! The PDF version of our SDM tool is now available! If you don't have access to reliable internet or prefer going through the tool offline, you can download your copy now: bit.ly/4aa4L0Q

Our updated Introduction to Haemophilia booklet is available to read on our website at the link below.

The booklet contains lots of information about the treatment, diagnosis and inheritance of haemophilia, along with many other relevant areas.

haemophilia.ie/wp-content/upl…

Important statement from WFH on proposed @ISTH Haemophilia Guidelines

Last days to apply as volunteer for the #EHC #Women and Bleeding Disorders (WBD) #Committee !

We warmly invite our NMOs’ most active and qualified members to apply by Monday 6 May.

More info here 👉 tinyurl.com/7fv6mjr8

Motion passed unamimously by National Member Organisations WFH General Assembly on erroneous and dangerous WHO Essential Medicines decision Fergal Bowers IrishHaemophiliaSoc EHC_Haemophilia

Speaking today on Tenders and Procurement for Haemophilia medictions WFH Academy to a diverse group of haemophilia organisation leaders. This online course is a great initiative

Our online physio-exercise and pilates classes take place every week! If you would like to join us for one of these classes or to learn more, please contact [email protected].

To become a member of the Irish Haemophilia Society or to renew your membership, fill out the form at the below webpage or call the office on 01 657 9900. 👇

haemophilia.ie/get-involved/r…

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