IPIA WPIW Celebration – Family/Conference Meeting April 21st
Dublin, Saturday 21st April, 2018 – The Irish Primary Immunodeficiency Association (IPIA) joined the efforts of organizations across the globe to promote awareness of primary immunodeficiency diseases during World PI Week, April 22-29. IPIA participates in worldwide initiatives to improve the recognition, diagnosis, treatment and quality of life of people with primary immunodeficiency diseases in Ireland, and the IPIA community can get involved! Patients, family members and friends can help spread awareness:
2018 World Primary Immunodeficiency Week is all about
“Early testing and diagnosis of Primary Immunodeficiency makes a world of difference”.
In the morning we had a very emotional session, two families shared their experience of travelling to the UK for transplant. In spite of the excellent care they received both in Ireland and in Newcastle, they pointed out how much more difficult travelling abroad for transplant made their journey. They described isolation from their family and support network, the guilt of leaving other children at home with family in Ireland whilst they lived in the UK. A paediatric bone marrow transplant unit already exists in Dublin and there are now skilled medical staff in Ireland who could set up such a service here in Dublin in the near future. Please support the Children Bone Marrow Campaign by following @facebook & Twitter @ChildrenBMT.
We also had an emotional testimonial and challenges of a young adult living with Hereditary Angioedema (HAE) a very rare and potentially life-threatening genetic condition.
Add Your Story– IPIA website features stories from patients and families, and you can listen to at IPIA Channel or Click here to read or share your story.
We will like to give a warm welcome to our new members who have registered during the event. If you have not yet register and wish to become a member, please register here
A Raffle was carried out during our event to collect funds for our Association, there were 12 prizes, we raised 300Euros. If you however still want to contribute you can donate here. Thank you!
For more information on the advances and what was said by all the speakers, Dr. Ronan Leahy, Dr. Mary Keogan and Dr. Ciara O’Rafferty please see our Press Release
It was a very emotional and informative meeting & conference we would like to thank you all Healthcare professionals and our sponsors, IPOPI, Octapharma and Caragen that made this possible. We look forward to see you all in our next year’s event
