PROGRAM

Palacio de Congresos

Recinto ferial Luis Adaro-FIDMA

Paseo Dr. Fleming, 481, 33203 Gijón

Scientific Advisory Board

Ana María Aranda Iriarte 
Guillermo de la Cueva Méndez 
Morrys Kaisermann 
Avner Yayon 
Laurence Legeai-Mallet 
Joana Bengoa 
Ravi Savarirayan 
Guillermo Ibaseta Díaz 
Pilar Cagiao Vila 
Juan Carlos Rial Basalo 
Liliana Santamarina Rabanal 
Josep María de Bergua 
Estrella Fernández Alba 
Antonio Lozano 

Alejandra Sánchez Yánquez
Saulo Fernández 

 

Sunday, October 9th 2022

8.00-9.00
Registration
(COVID measures according to indications)

9.00-10.00
Opening
Jesús Martín Blanco, Disability General Director Spanish Goverment
Pablo Ignacio Fernández Muñiz, Secretary of Health Principality of Asturias
Ana González, Mayor of Gijón
Ángel del Río Fernández, Fundación ALPE Secretary
Susana Noval, Fundación ALPE Coordinator

10.10-11.00
Agenda 2030, inclusion and diversity
Eduardo Madina

11.05-11.20
Coffee break

11.20-12.25
Multidisciplinary vision today
Encarna Guillén
Geneviève Baujat
Virginia Fano
Isabel Leiva
Antonio Leiva 
Stuart Mackenzie

Karen Heath
Moderator: Celia Horcajada

12.30-13.30
Clinical studies on different aspects of achondroplasia
Julie Hoover-Fong
Melita Irving
Ravi Savarirayan
Valérie Cormier

Virginia Fano
Moderator: Belén Sagastizábal

13.35-14.30
Consensus Paper Presentation

Organizations from: 
Bulgaria
Finland
France
Holland
Slovakia
United Kingdom
Spain
Moderator: Alberto Domingo

14.00
Children's lunch
14.35-15.55
Lunch

16.00-16.30
Achondroplasia and Anesthesia. How to design a trouble free anesthetic?
Mary Theroux
Abraham Oommen
Moderator: Josep de Bergua

16.35-17.35
Lengthening technics. New challenges
Dror Paley
Javier Alonso
Antonio Leiva
Borja Delgado
Moderator: Guillermo de la Cueva

17.40-18.10

Latest studies on hypochondroplasia

Andrew Dauber

QED

Moderator: Celia Horcajada

WORKSHOPS

All day long

Multisports

11.00-12.00

Back care in adulthood

Pedro Doménech

Socorro Martínez

12.00-13.00

Foot care in adulthood

Miguel Fuentes

13.30-14.30

A coffee with doctor Mackenzie

16.00-19.00

Inclusive sport. An example to follow: Badmington

Charla y sesión práctica

Federación Española de Badmington y Club Badmington Oviedo

16.00-17.00

Sexuality. Talking clearly

Ana Isabel Fernández Franco 

16.00-17.00

Looking after ourselvess. Adults with ASDD

Paloma González

Carlos León

16.00-17.00

Carry on working: physiotherapy since 8 years on

Carmen Barreal

Frances Guardo

17.00-18.00

Ask your physiotherapistss. Who said doubts?

Adela Álvarez-Santullano

Carmen Barreal

17.00-18.00

Decent jobs. Towards a decent society

Felipe Orviz

Saulo Fernández

Fundación ONCE representative

18.00-19.00

Starting school. Good practicas guide

Pedro Blanco

Ana Belén Rivas

Yolanda Sánchez

18.00-19.00

Beauty tips

Lorena Lafuente

Natalia García

21.00

V ALPE Awards to the best work for people with ASDD Ceremony

Llagar Castiello

Monday, October 10th 2022

9.30-10.30
Ongoing research
Ascendis Pharma
QED
Pfizer
BioMarin
Moderador: Guillermo de la Cueva

10.35-11.00
On collagenpathy
Karen Heath
Elvire Gouze
Moderator: Marcos Costalago

11.05-11.20
Coffe break

11.25-12.30
Back in ASDD. Diagnosis and prevention
David Feldman
Klane White
Ignacio Sanpera
Guirish Solanki
William Mackenzie
Jeffrey Campbell
Moderator: Pedro Doménech

12.35-13.10

Clinical trials in Spain. Update
Josep de Bergua
Antonio Leiva
Karen Heath
Moderator: Irene Gimeno

13.20-14.30
World organizations. Networking

France

Italy

Portugal

Germany

United Kingdom

Finland

Bulgaria

Holland

Romania

Slovakia

Russia

México

Guatemala

Colombia

Perú

Argentina

Uruguay

Chile

Brazil

Venezuela

United States

Japan

Pakistan

Ghana

Spain, Asociación CRECER

ADEE España
Moderador: Alberto Domingo

14.00
Children's lunch
14.35-15.55
Lunch

16.00-17.00

Healthcare experience on Vosorotide administrador. Reference hospitals
Morrys Kaisermann: Thoughts on the new paradigm of achondroplasia

Sergio Sousa
Geneviève Baujat
Antonio Leiva

Melita Irving
Moderator: Josep de Bergua

17.05-17.40
Current research and therapies on achondroplasia
Laurence Legeai-Mallet
Avner Yayon
Antonio Segura
Moderador: Guillermo de la Cueva

19.00

BioMarin Scholarships Assignation

19.05-20.00

Presentation of the short film Stand Tall

by its director, Peter Owusu, and its actress, Ama Dorcass, from Ghana

Discussion:

Vision of people with ASDD through history of cinema and art

Juan Arribas

Yago Pérez

María Luisa Garde

Real life stories

Marta Castillo

Kristen de Andrade

Cristina González Villar

Workshops

10.05-11.05

Mindfulness for your wellbeing 

Fidel Páramo

12.35-13-.35

I have a shunt. Why and what precautions must I take?

María Antonia Poca

16.00-17.00

When children start asking

Paloma González

Rights and duties

Felipe Orviz

Andrea Fraschina

José María Fernández de Villalta

Sports for all. Practical session

Ernesto Ruiz

Álvaro Jiménez

Raúl Micó 

17.00-18.00

Listening to families

Paloma González

Secondary education: priorities and challenges

Aitor López

Juan Antonio Sánchez

18.00-19.00

Speech Therapy open space. Looking ahead

Belén Ojeda

18.00-18.45

New disability Spanish scale. Q&A

Daniel García

Tuesday, October 11th 2022

09.00-09.55
Travel to diagnosis of ASDD
Karen Heath
Michael Bober
Sergio Sousa
Valérie Cormier

Enrique Galán
Moderator: Ignacio Sanpera

10.00-10.45x
Neurosurgery main challenges
Guirish Solanki
María Antonia Poca
Klane Whilte
Jeffrey Campbell
Moderador: Cristina Ferreras

10.55-11.10
Descanso café

11.15-11.40
Other skeletal dysplasia and anesthesia
Mary Theroux
Abraham Oommen
Moderator: Celia Horcajada

11.45-12.50
Reconstructive surgery. Developments in ASDD
Gorka Knörr
William Mackenzie

Borja Delgado
Ignacio Sanpera
Moderator: Karen Heath

12.55-13.15
Rehabilitation of ASDD. Upper and lower limbs
Frances Guardo
Moderador: Carmen Barreal

13.20-13.35
Nursery care
Colleen Ditro
Moderador: Carmen Barreal

13.40-14.00
ENT, key area
Antonio Lozano
Moderator: Belén Ojeda

14.05-14.30
Study: Maxilofacial area in ASDD
Ibaseta
Moderator: Belén Ojeda

14.00
Children's lunch
14.35-15.50
Lunch

16.00-17.00

Adults with ASDD. Clinical care
Encarna Guillén
Borja Delgado
Stuart Mackenzie
William Mackenzie
Moderador: Belén Sagastizábal

17.05-17.35

Natural history of children with achondroplasia. Current research
Michael Bober
Melita Irving
Moderator: Irene Gimeno

Worshops

16.00-18.00

Working on expectations on new treatments

Rosana García

17.00-18.00

Back and postural hygiene. Children and teenagers

Carmen Barreal

Pedro Doménech

The Voice: the best tool for adult life

Belén Ojeda

18.00-19.00

Nutrition through different life stages

Laura Garde

Emotional regulation for teenagers

Rosana García

19.00-20.00

Discusión. Initiatives to access to the drug in different countries

Alejandra Sánchez Yánquez

20.00

Closing 
Institutional representatives 
ALPE representatives 

21.00

Espicha

Llagar Bernueces

*Waiting to be confirmed