ePAG HTAD Co-Chair
Carmen QUIRÓS PAZ
Patient Advocate
Network
Heritable Thoracic Aortic Diseases (HTAD)
The Heritable Thoracic Aortic Diseases (HTAD) European Patient Advocacy Group (ePAG) is a key part of VASCERN’s network, ensuring that the voices of patients living with HTAD are central to the care and research provided by healthcare professionals.
What are Heritable Thoracic Aortic Diseases (HTAD)?
Heritable Thoracic Aortic Diseases (HTAD) refer to a group of genetic conditions that affect the thoracic aorta, the major artery that carries blood from the heart to the rest of the body. These conditions can lead to a weakening of the aortic walls, increasing the risk of aneurysm, dissection, or rupture. Early diagnosis and specialised care are essential for managing HTAD, as these conditions require lifelong monitoring and treatment.
Meet the HTAD ePAG Representatives
Carmen QUIRÓS PAZ from Spain and Elena DE MOYA RUBIO from Germany serve as the ePAG Co-chair and Deputy Co-Chair, respectively, for HTAD, representing patient organisations Asociacion Española de Afectados por el Sindrome de Marfan (SIMA) and Marfan Hilfe e.V.
ePAG HTAD Deputy Co-Chair
Elena DE MOYA RUBIO
Patient Advocate
Other ePAG Representatives
Other European Patient Organisations
Marfan Initiative Österreich
Bindweefsel.be
Czech Association Of Marfan Syndrome
Landsforeningen for Marfan Syndrom
Marfan Syndrome Support Group – Ireland
Associazione J Peter Onlus
Associazione Italiana Per La Lotta Alla Sindrome Di Marfan E Patologie Correlate
Associazione Vittorio per la Sindrome di Marfan e malattie correlate
Magica Onlus
Den I Asbl Syndrome De Marfan
Contactgroep Marfan Nederland
Marfanforeningen – Norwegian Marfan Association
Marfan Polska (Polish Marfan Association)
Slovak Marfan Association
Svenska Marfanföreningen
Aorta Dissektion Föreningen Skandinavien
Marfan Stiftung Schweiz
Europe
Marfan Europe Network
International Patient Organisations
Genetic Aortic Disorders Association (GADA) Canada
Marfan Foundation