IX WORLD CONFERENCE CORNELIA  De LANGE SYNDROME


Save the date
and schedule
your trip!

Boy and Girl 

IX WORLD

CONFERENCE

CORNELIA
De LANGE

SYNDROME



 

15th to 18th August 2017
MINAS GERAIS - BRAZIL
TAUE RESORT CAETÉ

Registration for the IX International Cornelia de Lange Syndrome Congress is open...
We would like to invite you to join us!
We hope to see you and your families at this great event.

cdlsworld

Logo

ASSOCIAÇÃO BRASILEIRA SÍNDROME CORNÉLIA DE LANGE

The 9-th world conference offers a exiting program, where attending families can learn very much!
We hope everybody will feel that this program deserves to make the (long) journey to Belo Horinzonte ...\

The conference for Families is from Wednesday to Friday. Note that we start very early on Wednesday, so arrival is expected in the afternoon of Tuesday

Tuesday will be a day for study for the experts (SAC) and for world collaboration (Federation Council), so arrival of participants for this day is expected on Monday.

Tuesday 15/08/2017

Families arriving can register for the conference on this day.
The main activities are 2 key meetings: 

  • The 2 yearly meeting of the Federation Council of CdLS member groups
  • The 2 yearly meeting of the International experts, the Scientific Advisory Committee (SAC)

Public areaRoom 1Room 2
8:00Reception

9:00h - 11:00
SAC meeting (Scientific Advisory Committee)CdLS World Federation Council Meeting
11:00 - 11:20
Coffee BreakCoffee Break
11:20 - 13:00
SAC meeting (Scientific Advisory Committee)CdLS World Federation Council Meeting
13:00 - 14:15Lunch

14:30 - 17:00
SAC meeting (Scientific Advisory Committee)CdLS World Federation Council Meeting
17:30 - 19:30Registration – Family reception

19:30 - 22:00

Dinner
Speakers:

  • Fábio Alves – President CdLS Brasil
  • Gerritjan Koekkoek – Chairman CdLS World Federation Council
  • Sylvia Huisman – President CdLS World Federation SAC


Wednesday 16/08/2017

First day of the Family Conference

Public AreaRoom 1Room 2
07:30 - 08:45Breakfast

09:00 - 17:00Consultations

09:00 - 11:15Consultations
Genetics I

Moderator: Dra. Florencia Pabletich

  • 09:00 - 09:20 – I have CdLS – Feliciano Ramos
  • 09:20 - 09:40 – Genetics and Phenotype – Antonie Kline
  • 09:40 - 10:00 – Genetics and Diagnosis – Frank Kaiser
  • 10:00 - 10:15 – Questions
Genetics II

Moderator: Dra. Chong Ae Kim.

  • 10:20 - 10:40 – Prenatal Diagnosis – Armand Botani
  • 10:40 - 11:00 – Genetics Counseling – Ana Cereda.
  • 11:00 - 11:15 – Questions

11:15 - 11:30
Coffee BreakCoffee Break
11:30 - 13:00Consultations
Paediatric CdLS

Classic and Moderate
Moderator: Dra. Lorena Nunes, Belo Horizonte, Brazil.

  • 11.30 - 11:50 – Paediatric CdLS Patient – Feliciano Ramos
  • 11:50 - 12:10 – Rehabilitation and Behaviour – Paul Mulder
  • 12:10 - 12:30 – Medical Follow-up; Paediatric Control – Jolanta Wierzba
  • 12:30 - 13:00 – Questions
Young and Adult CdLS

Classic and Moderate
Moderator: Ulla Mugler

  • 11:30 - 11:50 – Young and Adult Age in CdLS – Sylvia Huisman
  • 11:50 - 12:10 – Medical Follow-up – Antonie Kline
  • 12:10 - 12:30 – Sexuality – Natalie Blagowidow
13:00 - 14:15Lunch

14:30 - 17:00Consultations
Pediatric CdLS

Classic and Moderate (continued)
Moderator: Eduardo Zayen, Brazil.

  • 14:10 - 14:30 – Feeding Challenges/Diet Problems – Carol Potter
  • 14:30 - 14:50 – Dental Issues – Douglas Clemens, USA.
  • 14:50 - 15:10 – School Challenges/Inclusion – Carla Rocho, Brazil.
  • 15:10 - 15:30 – Alternative Techniques for Special Needs - Emily Taylor Snell
  • 15:30 - 16:00 – Questions
Legal Aspects

Rights, Inclusion, Interdiction, Heritage

  • 16:00 - 16:20 – Laws, Benefits – Rodrigo da Cunha Pereira
  • 16:20 - 16:40 – Inclusion – Rodrigo da Cunha Pereira
  • 16:40 - 17:00 – Interdiction, Heritage – Cláudia Grabois
  • 17:00 - 17:20 – Questions
  • 17:00 - 19:00 – Makaton Workshop - Maria João Cunha
Young and Adult CdLS

Classic and Moderate (continued)

  • 14:10 - 14:30 – After School Life – Carla Rocho, Brazil
  • 14:30 - 14:50 – Autonomous Residence and Jobs – Paula Costa
  • 14:50 - 15:10 – Dental problems – Aline Tovo, Brazil.
  • 15:10 - 15:30 – Behaviour – Chris Oliver
  • 15:30 - 16:00 – Questions
19:30 - 22:00

Dinner



Thursday 17/08/2017

Second day of the Family conference

Public AreaRoom 1Room 2
07:30 - 08:45Breakfast

09:00 - 17:00Consultations

09:00 - 11:15Consultations
CHALLENGES IN CdLS

Moderator: Pedro Paulo Vanzilota, Brazil.

  • 09:00 - 09:20 – Psychomotor Development and Rehabilitation – Carmen Lia Moreira, Brazil.
  • 09:20 - 09:40 – Gastroesophageal Reflux – Carol Potter
  • 09:40 - 09:50 –Surgery and Anaesthesia – Pedro Paulo Vanzilotta
  • 09:50 - 10:10 – How to Recognize and Treat Behaviour Alterations in CdLS – Julia O'Connor
  • 10:10 - 10:30 – Questions


  • 09:00 - 10:30 – Speech Therapist meeting – Maria João Cunha
11:15 - 11:30
Coffee BreakCoffee Break
11:30 - 13:00Consultations
COMMUNICATION AND CdLS

Moderator: Dra. Andréa Scaletzky

  • 10:00 - 10:30 – Neurological Aspects – Chris Oliver
  • 10:30 - 11:00 – General Aspects – Olivia Mesquita, Brazil.
  • 11:00 - 11:30 – Augmentative Communication – TBC
  • 11:30 - 12:00 – Assistant Technology – Emily Taylor Snell
  • 11:30 - 11:50 – Alternative Communication – Maria João Cunha
  • 11:50 - 12:10 – Questions

12:30 - 14:00Lunch

14:00 - 15:30Consultations
EXCHANGE EXPERIENCES

Between Doctors and Parents/Carers

  • CHAT 1 – Feeding Problems
    * Moderator Family: Roberta Viana
    * Moderator Brasilian: Gastro da Roberta
    * Moderator Other: Sylvia Huisman and Carol Potter
  • CHAT 3 - Behaviour
    * Moderator Family: TBC
    * Moderator Brasilian: Carla Rocho
    * Moderator Other: Paul Mulder and Chris Oliver
EXCHANGE EXPERIENCES

Between Doctors and Parents/Carers

  • CHAT 2 - Communication
    * Moderator Family: Andréa Scaletzky
    * Moderator Brasilian: Olivia Mesquita
    * Moderator Other: Maria João Cunha
16:00 - 18:00

Moderator: Ulla Mugler

  • 16:00 - 16:20 – Linha Rara – Regina Próspero, Brazil.
  • 16:20 - 16:40 – Casa dos Marcos – Paula Costa
  • 16:40 - 17:10 – Clinical Protocols – Antonie Kline
  • 17:10 - 17:30 – Digital Community Service – Sylvia Huisman
  • 17:30 - 18:00 – Questions

19:30 - 22:00

Dinner



Friday 18/08/2017

Third and final day of the Family Conference

Public AreaRoom 1Room 2
07:30 - 08:45Breakfast

09:00 - 11:00Consultations

09:00 - 10:00Consultations

Speech Therapist meeting – Maria João Cunha


12:00 - 14:00Check-out/Lunch