From 18-20 October, delegates from all the various patient associations which make up the federation HHT Europe (Sweden, Denmark, Norway, Ireland, Netherlands, Italy, Germany, France and Switzerland) got together to share experiences and knowledge of HHT.
We visited the Centro de Investigaciones Biológicas (CIB) where we were guests of Dr. Luisa Botella. She introduced us to Dr. Sol Marcos, from the Hospital Función de Alcorcón and Mrs. Rocio Cañamaque, founder of León Research. We were also honoured to have the presence of Dr. Guillermo Giménez Gallego, ex-director of the CIB. We as HHT patients are indebted to the work of Dr. Luisa Botella, as a dedicated HHT researcher in the CIB. The importance of the association with CIB must be understood and is fundamental to the progression in finding a cure for HHT
We attended 2 days of presentations on various themes including The practice of Sclerotherapy for patients with nosebleeds according to International HHT Guidelines, The work being carried out by HHT CAB (Community Advisory Board), Orphanet Emergency Guidelines for HHT, How to acess Orphan drugs ,HHT Centres across Europe and finally the update on work being done on the new HHT Europe website, which is now nearing completion.
HHT Ireland would like to thank all in HHT Espana for being such wonderful hosts and we take home wonderul memories and so much information!
Enjoy the photos.