Upcoming Meetings
Please save the dates May 28th and 29th, 2019 for the next meeting of the FD/MAS International Consortium. The meeting will take place in Florence, Italy. The organizer is Dr. Maria Luisa Brandi.
REGISTRATION
Registration is free, please complete this form:
| Registration Form |
Submit completed form:
By Mail:
Fondazione FIRMO – via Reginaldo Giuliani, 195/a – 50141 Firenze – Italia
By email:
fdmas@fondazionefirmo.com
By fax:
[+ 39 055 23 06 919]
Poster Abstract Submission and the Charles Harles Award
FDF is accepting poster abstracts. One poster submission will receive the first ever Charles Harles Award for Excellence in FD/MAS Research. The recipient have the opportunity to present their research as part of the main agenda of the meeting, and receive a $1500 stipend, special recognition ribbon, and a certificate. Submit by 4/30/2019. Click here for more details.
Preliminary Agenda:
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: Michael 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”, I
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 Diseases in MAS
Daniele Tessaris University of Turin, I
11.20 Gonadal disease in MAS
Malgorzata 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
Alison Boyce, 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
16.35 Surgical Treatment of Bone Lesions in McCune-Albright Syndrome. twenty years experience.
Ernesto Ippolito, University of Rome “Tor Vergata”
16.65 Presentation from the winner of the Charles Harles Award for Excellence in FD/MAS Research
17.10 FD/MAS International Consortium Terms of Reference
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 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
13.30 End session ECM
14.00-19.00 International Patient Afternoon organized by Eamas
Those interested in participating please send an email with: Surname / name / address / email
Send to: fdmas@fondazionefirmo.com
Previous Meetings
Mechanistic and Therapeutic Advances in Rare Skeletal Diseases
A meeting in affiliation with the American Society for Bone and Mineral Research (ASBMR)
SEPTEMBER 26-27, 2018
Preceding the ASBMR Annual Meeting. Montreal, Canada
A meeting jointly organized by the Rare Bone Disease Alliance (RBDA) and the Brittle Bone Disorders Consortium of the NIH Rare Diseases Clinical Research Network to bring together scientists interested in rare bone disease. The program will cover state of the art topics in diagnosis, preclinical mechanisms of disease, clinical targeting of signaling pathways, and novel clinical endpoints for assessment of efficacy.
|
Program Chair |
Program Co-Chair Maurizio Pacifici, PhD Children’s Hospital of Philadelphia |
Program Committee:
| Yang Chai, DDS, PhD USC |
Michael Collins, MD NIDCR |
Matthew Drake, MD, PhD Mayo Clinic |
Deborah Krakow, MD UCLA |
Sandesh Nagamani, MD Baylor College of Medicine |
REGISTRATION ($300)
- Registration for this meeting will be available only through the ASBMR’s Annual Meeting registration opening in May 2018
- Reduced Registration ($150) for allied health professionals, students, fellows, residents, government, VA, and military attendees.
ABSTRACT SUBMISSION
- Abstract submission will also only be available through ASBMR beginning in early March
- Abstracts must be submitted by April 11, 2018
- Selected posters may be displayed at both the ASBMR and the Rare Bone Disease Alliance meeting
- Presenters may only present an oral presentation at the ASBMR meeting OR the Rare Bone Disease Alliance meeting
Information and links will be updated as it becomes available.
Preliminary Agenda:
Wednesday, September 26 and Thursday, September 27
Session 1: Diagnostic Approach to Rare Skeletal Diseases
Speaker 1– Brendan Lee, MD, PhD (Baylor College of Medicine) on next generation sequencing and multi-omic approaches for diagnosis skeletal diseases
Speaker 2– Struan Grant, PhD (Children’s Hospital of Philadelphia) on higher order chromatin structure and distal genetic interactions in the diagnosis of skeletal diseases
Speaker 3– Deborah Krakow, MD (University of California, Los Angeles) on radiographic and ultrasound imaging of skeletal diseases
Speaker 4– David Eyre, PhD (University of Washington) on past, current and future biomarkers of the skeleton
Session 2: Preclinical Models and Pathogenesis (Bones, Cartilage & Craniofacial)
Speaker 1– Michael Collins, MD (National Institute of Dental and Craniofacial Research) on Fibrous Dysplasia
Speaker 2– Frank Rauch, MD (Shriners Hospital of Montreal) on Osteogenesis Imperfecta
Speaker 3– Yingzi Yang, PhD (Harvard School of Dental Medicine) on Progressive Heterotopic Ossification
Speaker 4– Anna Teti, PhD (University of L’Aquila) on Osteopetrosis
Speaker 5– Maurizio Pacifici, PhD (Children’s Hospital of Philadelphia) on chondrodysplasias
Speaker 6– Andrew Wilkie, FRS, FMedSci, FRCP (University of Oxford) on craniosynostosis
Speaker 7– Ophir Klein, MD, PhD (University of San Francisco) on Hypo-oligodontia and tooth stem cells
Session 3: Therapies on the Horizon and New Disease Targets
Speaker 1– Yang Chai, DDS, PhD (University of Southern California) on dental stem cell therapies
Speaker 2- Denise Adams, MD (Harvard) on Gorham’s Disease
Speaker 3– Cecelia Gotherstrom, PhD (Karolina Institutet) on Stem Cells for Treatment of OI and the BOOSTB4 Trial
Speaker 4– Timothy Bhattachyrra, MD (National Institutes of Health) on Melorheostosis
Speaker 5– Peter J. Brown, Phd (University of Toronto), on Chemical Biology and Drug Discovery
Session 4: Targeting Signaling Pathways (Clinical)
Speaker 1– Sandesh Nagamani, MD (Baylor College of Medicine) on clinical trial of anti-TGFb in OI
Speaker 2– Andreas Grauer, MD (Amgen) on anti-sclerostin therapy
Speaker 3– Tom Carpenter, MD (Yale University) on FGF23 and X-linked hypophosphatemia
Speaker 4– Julie Hoover Fong, MD, PhD (Johns Hopkins) on C-naturietic peptide & achondroplasia
Session 5: Advances in Endpoints and Assessments (Preclinical & Clinical)
Speaker 1– Steven Boyd, PhD (University of Calgary) on high resolution peripheral qCT evaluation of bone
Speaker 2– Sharmila Majumdar, PhD (University of San Francisco) on MRI evaluation of cartilage
Speaker 3– Theresa Kehoe, MD and Gemma Kuijpers, PhD (FDA) on FDA approach to novel endpoints.
Speaker 4– William Horton, MD (Oregon Health Sciences University) on novel growth plate markers
Session 6: Approach to Pivotal Phase 3 and Post-Approval Studies
Presentations to include: representative from Regeneron; Donna Grogan, Clementia; and representatives from other companies including Ultragenyx, Mereo, Alexion (post-marketing issues).
For additional information, contact waldmancharlene234@gmail.com
The Rare Bone Disease Alliance is a program of the Osteogenesis Imperfecta Foundation.