SATURDAY / SEPTEMBER 11

Visit Leiria

10H00

Tourist Route 1

11H30

Tourist Route 2

13H30

Secretariat

Opening Session

14H30 

Pedro Morouço (ESECS Director)
Inês Alves (ANDO Portugal)
Carolina Lemos (Scientific Commission)

14H50

Widening Horizons - ANDO Delegation in Madeira
Cláudia Aguiar (ANDO Portugal) 

Session 1 - Clinical Centers with Expertise for Skeletal Dysplasia
Moderation - Inês Alves

15H15

The European Reference Network for Rare Bone Disorders - ENR BOND (EN*)
Luca Sangiorgi (ERN BOND Coordinator) - Italy

15H45

Multidisciplinary Care for Skeletal Dysplasias Outclinic in 2 Main Hospitals (Pediatric & Adult)
Sérgio Sousa (Coimbra Pediatric hospital)
André Travessa (Santa Maria Hospital, Lisbon)

16H20

Coffee Break

Session 2 - Scientific and Social Research in Skeletal Dysplasias
Moderation - Carolina Lemos

16H50

Stages and Process of Approval of Orphan Drugs for Skeletal Dysplasias                                                             
Dinah Duarte (INFARMED - National Medicine Agency) 

17H20

Pioneering Research in Collagenopathies Type 2 (EN*)
Elvire Gouze (CEO Innoskel) France

17H50

The QoLA Study - Experiences of Parents of Children with Achondroplasia (EN*)
Julia Quitmann (Univ. Medical Center Hamburg-Eppendorf) - Germany

18H30

Functioning and Well-Being of Children with Achondroplasia - Global Study Outcomes (EN*)
Alden Smith (Ascendis Pharma) - USA

19H00

Closure - Day 1

20H00

Congress Dinner
Address: Restaurant of the Hotel Eurosol Leiria & Jardim (500 m distance from ESECS)
-> How to get there

SUNDAY / SEPTEMBER 12

Session 3 - Multidisciplinary Care in Skeletal Dysplasias
Moderation - Carolina Lemos

10H00

Everyday Mobility and Symptoms for Skeletal Dysplasias - Live Stream (EN*)
Penny Ireland (Queensland Children's Hospital) - Australia

10H30

Diagnosis and Management of Individuals with Achondroplasia                                                                                 
Sérgio Sousa (Coimbra Pediatric hospital)

11H00

Impact on Quality of Life - Burosumab for XLH
Telma Francisco (D. Estefânia Hospital, Lisbon)

11H30

Coffee Break

12H00

Orthodontics and Craniofacial Corrections in Skeletal Dysplasias
Ana Roseiro (Faculty of Dentinstry - Coimbra University)

12H30

Pregnancy in Women with Skeletal Dysplasia - Life Experiences
(Moderation - Inês Alves)
Laurinda Mota and Kenia Rio  (Annabra - Brazilian patient organization)

13H00

Lunch

Session 4 - Open Conversations

14H30

Living the Diagnosis
Lia Silva (ANDO Portugal)

15H30

Family Influence on the Transition from Adolescence to Youth
Margarida Custódio dos Santos (ESTeSL)

16H30

Reflexions and Closure
Inês Alves (ANDO Portugal)

16H45

Coffee

All non-English sessions will have simultaneous translation to English

*Session in English / **Online session tbc.