ePAG HHT Co-Chair
Paolo FEDERICI
Patient Advocate
Network
Hereditary Haemorrhagic Telangiectasia (HHT)
The Hereditary Haemorrhagic Telangiectasia (HHT) European Patient Advocacy Group (ePAG) plays a central role in advocating for the needs of patients with HHT. This group of patient representatives works closely with healthcare professionals within VASCERN to ensure that the voices of individuals living with HHT are heard.
What is Hereditary Haemorrhagic Telangiectasia (HHT)?
Hereditary Haemorrhagic Telangiectasia, or HHT, is a rare genetic disorder affecting blood vessels. It causes abnormal connections between arteries and veins, known as arteriovenous malformations (AVMs), which can result in frequent nosebleeds, internal bleeding, and other complications in organs such as the lungs, liver, and brain. Specialised care is critical for managing these complex symptoms.
Meet the HHT ePAG Representatives
Paolo FEDERICI from Italy and Luisa BOTELLA from Spain serve as the ePAG Co-chair and Deputy Co-Chair, respectively, for HHT, representing patient organisations Associazione Fondazione Italiana HHT Onilde Carini and Asociaciòn HHT España.
ePAG HHT Deputy Co-Chair
Luisa BOTELLA
Patient Advocate
Other ePAG Representatives
Other European Patient Organisations
Grace Nolan Foundation
International Patient Organisations
HHT Canada THH
Cure HHT