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In advance of World Haemophilia Day, the CHI at Crumlin team hosted an information stand to raise awareness and share resources about haemophilia, von Willebrand disease and other inherited bleeding disorders.

Every year on 17th April World Haemophilia Day is recognised worldwide to increase awareness of haemophilia, von Willebrand disease and other inherited bleeding disorders. This is a critical effort since with increased awareness comes better diagnosis and access to care for the millions who remain without treatment around the world.

World Haemophilia Day was started in 1989 by the World Federation of Haemophilia (WFH), which chose 17th April as the day to bring the community together in honour of WFH founder Frank Schnabel’s birthday.

The theme of the event this year is "Access for All: Partnership. Policy. Progress. Engaging your government, integrating inherited bleeding disorders into national policy."

Twinning Project

Under the auspices of the World Federation of Haemophilia, CHI at Crumlin and St. James’s Hospital have twinned with Al Bashir Hospital in Jordan to help improve access to haemophilia for individuals living with haemophilia. A team from CHI at Crumlin visited Jordan in 2019 but were unable to travel in 2020 and 2021 due to the COVID-19 pandemic. The team kept in contact virtually over 2020 and 2021. Haemophilia Nurse Specialist Imelda Kelly and Lighthouse Project Nurse Ruth Hunter Nolan will be travelling to Jordan in May/ June this year with a multi-disciplinary team from St James’s Hospital as well as representatives from the Irish Haemophilia Society. The CHI at Crumlin team also spoke at the International Conference on Thalassemia, Haemophilia and Sickle Cell Disease (Jordan, Lebanon, Palestine) in 2019 and 2021.

Fostering healthcare links between Ireland and Jordan

The CHI at Crumlin team has been in contact with Dr Vincent O’ Neill, Irish Ambassador to Jordan whose term of duty has recently finished and hopefully when travel dates are finalised they will meet the new ambassador. The Irish Embassy in Jordan is relatively new.

Syrian Refugee Families with Haemophilia

The CHI at Crumlin team has been in contact with the Department of Justice and HSE, CHI CEO Eilish Hardiman, and CHI at Crumlin Clinical Director Professor Sean Walsh regarding bringing Syrian refugee families with children haemophilia to Ireland from Jordan on the basis of medical need. Three families have been identified and hopefully will be travelling to Ireland later this year for treatment

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