PROGRAM
(Preliminary)
Embedded Files
Day 1
NOVEMBER 14, 2026
NOVEMBER 14, 2026
SATURDAY
9:00 - 9:30
OPENING SESSION
Authorities to be confirmed
Susana Noval Iruretagoyena, Director of the Foundation
9:30 - 9:45
STRENGTH LIES IN THE JOURNEY
Opening Lecture:
“Looking to the Future with Hope”
9:50 - 10:35
10:40 - 11:00
BEYOND THE DIAGNOSIS
Karen Heath Geneticist
Isidoro Narbona Gynecologist
Susana Noval Presentation of the study “First News”
Moderator: Alejandra Sánchez
PHYSIOTHERAPY FROM SCHOOL AGE TO ADULTHOOD
Carmen Barreal
Ma. José Sosa
Moderator: Susana Noval
Sports Workshop
"Advice on sports practices for children, youth, and adults"
Ernesto Ruíz Polo.
Paralympic Promises.
"A Day in the Life of..."
Catalina Sagastizabal
Álvaro Jiménez
Spanish Paralympic Committee
COFFEE BREAK 11:00 - 11:25
11:30 - 12:50
PRESENT AND FUTURE OF TREATMENTS IN SKELETAL DYSPLASIAS
ASCENDIS
BioMarín
BridgeBio
Tyra
Moderator: Guillermo de la Cueva
AQUATIC THERAPY for Ages 8–16
Carmen Barreal
Self-Care in Adulthood
Rosana García, Psychologist
Antonio Leiva, Traumatologist
12:55 - 13:55
Transition from pediatric age to adulthood.
Multidisciplinary clinical management.
Human Growth Foundation
Ana Coral Barreda
Karen Heath
Antonio Leiva
Josep de Bergua
Moderator: Duke Pisit
Foot care and footwear
for babies 0-3 years old.
Alicia Fernández Mengibar, podiatrist
SELF-CARE IN ADULTHOOD
Rosana García, Psychologist
Antonio Leiva, Orthopedic Surgeon
LUNCH 14:00 - 16:00
16:00 - 16:45
Hypochondroplasia, Multidisciplinary Management.
Getting to Know Other Dysplasias.
Human Growth Foundation
Ana Coral Barreda
Karen Heath
Rhoda Akilapa
Josep de Bergua
Moderator: Duke Pisit
Back and quality of life in skeletal dysplasias.
Carmen Barreal
Juan Miguel Gómez Palomo
PULMONOLOGIST AND NEUROSURGERY: Assessment and Follow-up
Sara Iglesias Neurosurgeon
Pulmonologist to be confirmed
Moderator: Belén Pimentel
16:50 - 17:20
SCHOOL: Challenges and Opportunities
Carmen Alonso
Marián Losada
Aitor López
Izan, Alba, Tiago, Javier Rodrigo
Moderator: Susana Noval
"Doubt Club, what really matters to us"
Carlota and Lola
17:25 - 18:15
OUR PERSPECTIVE: “What We Want to Share”
-Children share their experiences.
-Children share their experiences.
-Presentation of the project:
“Weekend Programme for Adolescents”
Moderator: Cristina González Villar
18:15 - 19:15
WORKSHOPS
Listening Workshop (parents 0 - 12). Rosana García
Listening Workshop (parents 12 - 18).
Listening Workshop, adults only. Marián Losada
Legal Consultation Workshop. Felipe Orviz
Mindfulness Workshop. Fidel Páramo
Know Your Rights and Make Them Count Workshop. CUME, disability certificate, claims... Practical Guide. Socorro Martínez Ríos
DINNER – DANCE
21:00
Day 2
NOVEMBER 15, 2026
NOVEMBER 15, 2026
SUNDAY
10:00 - 11:00
LIMB LENGTHENING AND COMMON SURGICAL PROCEDURES
When, How and Why?
Moderator: Felipe Luna
AQUATIC THERAPY for Ages 0–7
Carmen Barreal
11:05 - 11:40
RESEARCH IN SPAIN: Current Overview and New Horizons
Moderator: Antonio Leiva
PHYSIOTHERAPY IN LIMB LENGTHENING
Ma.José Sosa
11:45 - 12:15
CURRENT APPROACHES IN PEDIATRIC ENDOCRINOLOGY
Follow-up of Children With and Without Treatment
Isabel Leiva Málaga
Ana Coral Barreral Madrid
Purificación Marín Reina Valencia
Ana Prado. Galicia
Moderator: Karen Heath
"Ready for High School, Tips to Start Off on the Right Foot"
Rights, adaptations, and opportunities...
Carmen Alonso
Belén Ojeda
12:20 -12:40
Pulmonology and Neurosurgery: Clinical evaluation and follow-up.
Sara Iglesias, Neurosurgeon Pulmonologist Sleep study expert
Moderator: Belén Pimentel
INFANT MASSAGE for Ages 0–3
Belén Ojeda Ruisánchez
12:45 -13:10
NUTRITION THROUGHOUT LIFE
Laura Garde
Moderator: Isabel Leiva
13:10 - 14:00
THE VOICE OF A NEW GENERATION
Adulthood in First Person: “The Future Starts Now”
-Open discussion session: our young adults share their experiences
-Presentation of the student exchange programme within the EU/Europe and the USA
CLOSING CEREMONY
14:00
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