HHT Ireland

This voluntary organisation was set up in the memory of the late Grace Nolan and the late Paul Woods. Both children died suddenly – aged 9 and 22 respectively, from HHT in the lungs. It is hoped that no other person should suffer this fate. Our patient organisation is here to help all families living with HHT.

Member Q&A

What is your goal? 

HHT Ireland works to raise awareness of this genetic blood-vessel disorder and support families affected by HHT. 

How have you been working towards it? 

HHT Ireland raises awareness in the public arena by means of an informative website and busy social media platforms - Insta, FB & Twitter.  We organise annual fundraisers in June - the global Month of HHT. We share our personal stories in national newspapers, Radio & TV appearances to help sufferers realise they are not alone! We share HHT Booklets with Drs & Dentists nationwide to help reach the undiagnosed families .HHT Ireland also supports families affected by HHT by hosting Annual Forum , distributing HHT material and offering monthly online Zoom meetings for anyone affected by HHT. 

How has being a member of The Wheel helped? 

Being honest, HHT Ireland has yet to take full advantage of our membership of The Wheel. However, we have been receiving newletters and are kept up to date with all that is on offer. The information and advice received in relation to Good Governance Code was invaluable and helps keep us in line with all requirements. 

How can people support you? 

HHT Ireland is always on the lookout for new members - especially those in the communications & legal world! As all our members are volunteers, we have yet to cover all aspects of expertise. Social media plays a huge role in the work we do and any help in this regard would be so truly appreciated. 

Do you have any success stories to share? 

Since the inception of our patient organisation - HHT Ireland - we have been able to direct many patients to our Specialist Centre in Mercy University Hospital, Cork where they have received Genetic Testing and screening for HHT. As 90% sufferers of HHT go undiagnosed, this is a fabulous result. With the correct diagnosis & treatment, the majority of patients will go on to live full and healthy lives. This is indeed our success story! 

Where can people find you on social media? 

Website: www.hhtireland.org   

Facebook: HHTIreland   

Twitter: @HHTireland   

Instragram: @hht_ireland