El fin de semana del 15 al 17 de noviembre de 2019 se ha desarrollado en la sede de CREER en Burgos (Centro de Referencia Estatal de Enfermedades Raras) el I. Congreso Nacional de Displasia Fibrosa y el Síndrome de McCune-Albright, organizado por la ADF. Se han podido seguir interesantes ponencias de médicos especialistas en la enfermedad. 4th Meeting of the International FD/MAS Consortium Florence, May 28-29, 2019 Organizer: Dr. Maria Luisa Brandi DAY 1, Tuesday May 28 8.00 Registration 8.30 Opening and Welcome FIRST SESSION: BASIC RESEARCH Chairmen: Mike Collins and Luca Sangiorgi 8.45 GNAS Spectrum of Disorders Giovanna Mantovani, University of Milan, I 9.05 The Role of Stem Cells in FD Initiation and Maintenance Mara Riminucci, University of Rome “La Sapienza”, 9.25 Mouse models of FD/MAS Yingzi Yang, Harvard Dental School, Boston, MA, USA 9.45 Human cellular models of FD/MAS Ed Hsiao, UCSF, San Francisco, USA 10.05 Gene Mutation Analysis in FD/MAS Luisa de Santis, University of Turin, I 10.25 Future Agenda of Basic Research Panel Discussion 10.45 Coffee Break SECOND SESSION: EXTRASKELETAL DISEASE Chairmen: Daniele Tessaris and Neeven Hamdy 11.00 Endocrine Disease in MAS Daniele Tessaris University of Turin, I 11.20 Gonadal disease in MAS M Wasniewska , University of Messina, I 11.40 Use of Biological Markers in FD/MAS Roland Chapurlat, University of Lyon, F 12.00 Cancer Risk in FD/MAS Natasha M Appelman-Dikstra Leiden University, NL 12.20 MAS – Associated Gastrointestinal Pathologies Michael Collins, NIH NIDCR Bethesda, USA 12.40 Lunch and Poster Session THIRD SESSION: INSIGHT IN DIAGNOSIS Chairmen: Natasha M Appelman-Dikstra and Laura Masi 14.00 Fibrous Dysplasia Imitating Malignancy Rodolfo Capanna, University of Pisa, I 14.20 Use of Biological Markers in FD/MAS Pablo Florenzano, Catholic University of Santiago, Chile 14.40 Imaging modalities in FD/MAS Michael Collins, NIH NIDCR Bethesda, USA 15.00 Coffee Break FOURTH SESSION: SURGICAL THERAPY Chairmen: Giovanni Beltrami and Lorenzo Genitori 15.15 Craniofacial Fibrous Dysplasia: The Point of View of the Neurosurgeon Lorenzo Genitori, AOU Meyer, Florence, I 15.35 Craniofacial Fibrous Dysplasia: The Point of View of the Maxillofacial Surgeon Giuseppe Spinelli, AOU of Careggi, Florence 15.55 Scoliosis in FD/MAS Robert Stanton, Nemours Ch, Orlando, USA 16.15 The Expert Orthopaedic Surgeon Giovanni Beltrami, AOU of Careggi, Florence 10.10 Dinner Day 2, Wednesday May 29 FIFTH SESSION: THE PAIN ISSUE Chairmen: Maria Luisa Brandi and Anne Marie Heegaard 8.30 Pathogenetic Mechanisms of Bone Pain Diego Fornasari, University of Milan, I 8.50 Clinical Evaluation of Bone Pain Renato Vellucci, AOU Careggi, Florence, I 9.10 What Are We Doing to Answer Patients’ Needs? Roland Chapurlat, University of Lyon, F 9.30 Assessing bone pain in fibrous dysplasia Anne Marie Heegaard, Copenhagen University, DA 9.50 Designing Analgesic Trials Panel Discussion 10.10 Coffee break SIXTH SESSION: PHARMACOLOGICAL THERAPY Chairmen: Alison Boyce and Deanna Portero 10.30 FD/MAS: Treating Children and Adolescents with Antiresorptive medications Alison Boyce, NIH, Bethesda, USA 10.50 Results from Recent Clinical Trials Roland Chapurlat, University of Lyon, F 11.10 Osteoporosis Treatment in Special Patient Populations Laura Masi, AOU of Careggi, Florence, I 11.30 Denosumab Trials Neveen Hamdy, Leiden University, NL 11.50 Prospects for the Future Panel Discussion SEVENTH SESSION: QUALITY OF LIFE ANALYSIS Chairmen: Kassim Javaid and Pablo Florenzano 12.30 Bond as platform for Rare Bone Disorders Luca Sangiorgi, Bologna, I 12.50 Driving improvement in clinical centres – effectiveness, efficiency and patient experience – designing a global audit of clinical services based on the global pathway Valter Dal Pos, Torino, I 13.10 Bringing together research across borders: natural history of disease database opportunities in the ERN and further afield Michael Collins, NIH NIDCR Bethesda, USA 13.30 Lunch and Poster Session 14.00-19.00 International Patient Afternoon El día 23 de mayo y organizado por el Rotary Club Pollença, Presentación de la Asociación de Displasia Fibrosa en la Sala de Actos del Real Club Náutico del Puerto de Pollença (Mallorca) a cargo de la Dra. Doña Lucía Ugarriza Hierro (Vice-Presidenta de la Asociación) y de Don Pere Antoni Borrás (Vocal de la Asociación).Noticias y Eventos
En esta sección os mantendremos informadas(os) de cuantas actividades organicemos o participemos.
Congreso de ADF en Burgos: 15-17 de noviembre de 2019
Los días 28, 29 y 30 de mayo de 2019 se ha desarrollado en Florencia el IV Congreso del Consorcio Internacional de DF/MAS. La ADF ha estado presente. Este era el programa:
El día 23 de mayo, Presentación de la Asociación de Displasia Fibrosa en la sala de actos del Real Club Náutico del Puerto de Pollença (Mallorca).