ALPE 2024 NATIONAL CONGRESS

ALPE 2024 NATIONAL CONGRESS

 Malaga, 26-27 October 2024
INFORMATION, REFLECTION, COMMUNICATION

In collaboration with the Skeletal Dysplasia Unit of the Hospital Virgen de la Victoria and the Maternal and Child Hospital of Malaga

Scientific and technical advances are increasingly rapid and the decisions that people with ADEE (Achondroplasia and other Skeletal Dysplasias with Dwarfism) or their families have to make are becoming more complex and critical. The same complexity that exists in treatment and care options demands a central role for patients in medical care. Informed patients, experts in their own condition, united and close to the organisation that represents them. The ALPE Foundation is a reference in Spain and in many other countries. The annual national is essential to take the pulse of the community and provide training and knowledge.

• We educate and disseminate knowledge and best practices on ADEE.
   
• We promote patient-centred medicine, patients and/or caregivers who are aware of the condition and empowered to make informed and responsible decisions.
   
• We disseminate knowledge and best practices among professionals, promoting the flow of information and the creation of multidisciplinary teams and networks of specialists.
   
• We offer the possibility for affected people and their families to meet, establish mutual support networks and feel part of a community.
   
• We offer up-to-date information on research and clinical trials on achondroplasia, hypochondroplasia and others directly from the companies conducting them.
   
• We invite you all to attend our National Congress 2024 that takes place in Malaga, with the support and close collaboration of the Skeletal Dysplasias Unit of the Hospital Virgen de la Victoria and the Hospital Marterno-Infantil.

And we remind you that in 2025 the congress will be International and will take place in Gijón, but let's go by parts!

ALPE 2024 NATIONAL CONGRESS PROGRAMME

Congreso Nacional ALPE

We make the way as we walk

Málaga October 26-27 2024

Assambly Hall of Hotel Holiday World Village, Benalmádena

In collaboration with the ASDD Unit of the Virgen de la Victoria Hospital

and the Maternal-Infant Hospital of Malaga

Achondroplasia and other Skeletal Dysplasias with Dwarfism

 

Saturday, October 26, 2024

 

8:30 Registration

9:00-9:30 Opening

Encarnación Peláez Galvez, Head of the Healthcare Planning and Evaluation Service of the Territorial Delegation.

Fernando Salgado Ordóñez, Medical director of Regional Universitary Hospital of Málaga.

Borja Delgado, Deputy medical director of Universitary Virgen de la Victoria Hospìtal of Málaga

Javier Blasco Alonso, Coordinator of the Care Plan for People Affected by Rare Diseases.

Angel del Río, Secretary of the Board of Trustees of Fundación ALPE Acondroplasia

Susana Noval, director of Fundación ALPE Acondroplasia

 

9:35-10:35 Current phamacological treatmen: Voxzogo
Moderates: Karen Heath
Current clinical data
Isabel Leiva, pediatric endocrinologist, Materno-Infantil Hospital, Málaga
Ana Barreda, pediatric endrocrinologist, La Paz Hospital, Madrid
Purificación Marín, pediatric and geneticist, Universitary La Fe Hospital, Valencia
Pharmacovigilance, monitoring and data analysis
Isabel Leiva, pediatric endrocrinologist, Materno-Infantil Hospital, Málaga
People with ASDD analysis platform
Fernando Moreno Jabato, bioinformatics, Málaga

10:40-11:30 Multidisciplinary approach. From birth to adulthood
Moderates: Celia Horcajada
Importance of a good diagnosis
Isidoro Narbona, gynecologist, Regional Hospital, Málaga
Karen Heath, geneticist, Institute of medical and molecular genetics (INGEMM), IdiPAZ UMDE-ERN BOND, La Paz Hospital, Madrid
Multidisciplinary approach according to the different stages in the paediatric age (0-16 years)
Multidisciplinary team from Malaga; Materno Infantil Regional Hospital, Málaga and ADEE Unid, Universitary Virgen de la Victoria Hospital, Málaga
Presentation of the roadmap for achondroplasia, a tool for families
Susana Noval director of Fundación ALPE Acondroplasia
Multidisciplinary care in the different stages of adulthood
ADEE Unid, Universitary Virgen de la Victoria Hospital, Málaga

11:35-11:55 Coffee break

12:00-13:00 Trials and clinical studies: Spain
Moderates: Belén Pimentel
Josep de Bergua, principal investigator of clinical trials, UCA, Vithas San José Hospital, Vitoria
Ana Barredo, investigator of clinical trials, Universitary La Paz Hospital, Madrid
Borja Delgado, Antonio Leiva, Sara Marquez, Pilar Gómez, principal investigators of clinical trials, University Virgen de la Victoria Hospital, Málaga

13:00- 13:30 The importance of food, a constant challenge
Laura Garde, nutricionist, Gabinete Nuntia and Fundación ALPE Acondroplasia

13:35-15:50 Lunch

16:00-17:10 Research in achondroplasia and hypochondroplasia: clinical trials. Pharmaceutical companies
Moderates: Belén Pimentel
BioMarin
QED
Ascendis Pharma
Sanofi
Tyra

This presentation has simultaneous translation from English to Spanish. You can access it through the following address: https://us06web.zoom.us/j/84815880499

17:10-17:25 Analysis of results after two years of Voxzogo's administration in Portugal
Cristina Gomes, Coímbra Hospital, Portugal

This presentation has simultaneous translation from English to Spanish. You can access it through the following address: https://us06web.zoom.us/j/84815880499

17:25-17:40 Conscious parenting
Marian Losada. Psychologist

17:45-18:15 Prevention, our best tool
Moderates: Carmen Alonso
Physiotherapy
Cristina Caño, fisioterapeuta, Servicio Andaluz de Salud y Fundación ALPE Acondroplasia
Aquatic therapy
Carmen Barreal, fisioterapeuta, Equipo Fundación ALPE Acondroplasia
Functional speech therapy
Belén Ojeda, logopeda funcional, Equipo Fundación ALPE Acondroplasia

18:20-18:40 We are young, we talk. A conversation.

21:30 Dinner and party

 

Sunday, October 27, 2024

 

10:00-10:30 Frequent surgeries in skeletal dysplasias in children
Moderates: Josep de Bergua

Salvador Romero, anesthesiologist, ADEE Unid, Virgen de la Victoria Hospital, Málaga

Esther Díaz, pediatric traumatology, Materno Infantil Regional Hospital, Málaga

Sara Iglesias, neurosurgeon, Hospital Materno-Infantil, Málaga

10:35-10:55 Frequent surgeries in adulthood
Moderates: Antonio Leiva
Stenosis in adulthood: When to intervene
Manuel Fernández Hijano, spine specialist, Virgen de la Victoria Hospital, Málaga
Prostheses in adulthood: how and when to intervene
Juan Miguel López Palomo, Specialist in orthopedic surgery and traumatology, head of the knee unit at the Virgen de la Victoria Hospital, Malaga

11:00-11:40 Children speak, parents listen
Moderates: Cristina González Villar

11:45-13:00 ASDD School of Surgery. Round table
Moderates: Susana Noval
We prepare for the stretching process; frequently asked questions
Borja Delgado, Alfonso Queipo de Llano, Jorge Mariscal, Antonio Leiva, Traumatology, ADEE Unid, Universitary Virgen de la Victoria Hospital, Málaga
María José Sosa Sandoval, physiotherapist, ADEE Unid, Universitary Virgen de la Victoria Hospital, Málaga
Carmen Barreal, physiotherapist, Fundación ALPE Acondroplasia Team
Belén Ojeda, funcional speech therapist, Fundación ALPE Acondroplasia Team
After limb lengthening, what?
ADEE Unid, Universitary Virgen de la Victoria Hospital, Málaga

13:05-13:40 Presentation of ERN BOND and ePAGs activities by Susana Noval

13:45-13:55 Life experiences in the aduta age
Moderates: Cristina González Villar

13:55-14:10 ALPE-BioMarin Scholarship Award

14:15 Closing

Workshops

 

Saturday, October 26, 2024

10:30-11:30 Sports activity and first aid
*Workshop aimed at young people and adults
Ernesto Ruiz Polo, sports activities technician and INEF student.
Álvaro Jiménez, athlete.
Yanay Pedro Gaínza, nursing assistant

12:00-12:45
Take back control of your life: learn to breathe with visual support
*Workshop aimed at adults
Belén Ojeda

12:00-12:45
Aquatic therapy: 0-8 years
*An adult must be with the child
Carmen Barreal, physiotherapist specializing in aquatic therapy.

17:30-18:30
Needs for the school. From theory to practice
Nursery and Primary School, Mercedes Romero, primary education teacher and Ana Rivas, P.T
Secondary and High School, Aitor Lopez, high school teacher and Eva Burgoa, counselor

 

Sunday, October 27, 2024

 

10:00-11:00
Aquatic Therapy: 9-99 years
*Optional, one adult per child* Bring swimming cap
Carmen Barreal, physiotherapist specializing in aquatic therapy.

10:00-11:00
Mindfulness for young people
Fidel Páramo, psychologist, specialist in Mindfulness

11:00-12:00
Necessary resources: certificates of disability, dependency, mobility, scholarships...
Felipe Orviz, lawyer, legal advisor of Fundación ALPE Acondroplasia