CONFERENCIAS FAMILIAS

CONFERENCIAS FAMILIAS

CONFERENCIAS FAMILIAS tag Miércoles

08:30 : 09:30
Registration

Participants are welcomed and receive information material. 

09:30 : 10:10
Opening ceremony

Opening ceremony of the XI CDL World Congress. Official presentation of the conference, local authorities, President of the Congress, representatives of the organization, President of the World Federation, President of the SAC. 

Joana Mendivelso
David Axtell
Feliciano Ramos
10:10 : 10:40
Coffee Break
10:40 : 11:00
Let's talk about orphan (rare) diseases

A introduction of what makes it so special that your child is having a RARE disease...

Sandra Yaneth Ospina
11:00 : 11:20
CdLS ABC for families
Feliciano Ramos
11:20 : 11:40
Growth and Growth charts in CdLS
Leonie Menke
11:40 : 12:40
Questions
Feliciano Ramos
Leonie Menke
Sandra Yaneth Ospina
12:40 : 14:40
LUNCH
14:30 : 14:50
Adulthood in patients with CdLS - Sexuality and reproductive issues
Tonie Kline
Natalie Blagowidow
14:50 : 15:10
Importance of Patients Associations
David Axtell
Paola הודיה Mannucci הראל
15:10 : 15:30
CdLS in Colombia: Overview
Ignacio Zarante
15:30 : 16:00
Questions
Tonie Kline
Natalie Blagowidow
Paola הודיה Mannucci הראל
David Axtell
Ignacio Zarante
16:00 : 18:00
Panel of parents, sibs and caregivers
Eduardo Brignani

CONFERENCIAS FAMILIAS tag Jueves

08:30 : 09:10
Gastroenterological issues in patients with CdLS
Peter Gillett
09:10 : 09:30
Dental care in patients with CdLS
Mónica Patricia Eraso Paz
09:30 : 10:40
Questions
Peter Gillett
Mónica Patricia Eraso Paz
10:40 : 11:00
Coffe Break
11:00 : 11:20
Orthopedical issues in CdLS
Astrid Medina
11:20 : 11:40
Neurological issues in children with CdLS
Alberto Velez
11:40 : 12:00
Neurological issues in adults with CdLS
Tonie Kline
Lynne Kerr
12:00 : 12:40
Questions
Astrid Medina
Alberto Velez
Tonie Kline
Lynne Kerr
12:40 : 14:30
LUNCH
14:30 : 16:00
Clinics
16:00 : 18:00
Panel of Disabilities and Human Rights in Rare Diseases
Luz Marina Pérez Naranjo

CONFERENCIAS FAMILIAS tag Viernes

08:30 : 08:50
Fenotipos Cognitivos y Comportamentales en transtornos neurogeneticos
Gerardo Restrepo
08:50 : 09:10
Communication and behavioral issues in CdLS
Chris Oliver
09:10 : 09:30
Use of medications for behavioral challenges in CdLS
Marco Grados
09:30 : 10:40
Questions
Gerardo Restrepo
Chris Oliver
Marco Grados
10:40 : 11:00
Coffee Break
11:00 : 11:40
School and social issues in ASD and CdLS
Paul Mulder
11:40 : 12:00
How to arrive to the diagnosis of CdLS and the importance for families and patient associations
Juan Pié
12:40 : 14:30
LUNCH
14:30 : 16:00
Clinics
16:00 : 18:00
Panel of Siblings
Eduardo Brignani
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