1st international congress
about Beckwith-Wiedemann Syndrome
for families & professionals
Beckwith-Wiedemann Syndrome (BWS) is a congenital syndrome of cellular overgrowth, causing about thirty different symptoms including a greater predisposition to the development of embryonic tumors affecting internal organs, hypertrophy, and macroglossia. There are no pharmacological therapies to cure it.
The 1st International Congress on BWS will be held from June 2nd to 5th 2022 and will be available in hybrid mode, live in Cervia (Italy) and online on Zoom platform.
Why an International Congress?
Because BWS is present all over the world. The needs of those with BWS and their families are the same all over the world.
Therefore, the BWS International Community is one.
Doctors need to be able to update and compare in a precise and targeted way, while patients need information and multidisciplinary coordination.
Thanks to this congress, specialists will all be able to collaborate more consistently and coherently while expanding their existing network and create new opportunities of collecting data on a vast scale.
Patients will therefore benefit from a greater and more in-depth knowledge with a positive impact on the diagnosis methods and symptom management, as well as a greater and more reliable awareness of
what concerns them.
What are our objectives?
The event is centered on researchers sharing the latest on research, BWS care, with particular emphasis on:
- therapeutic strategies in heterometric treatment of the lower limbs
- glossectomy and management of macroglossia
- hepatoblastoma screening strategies
- reflections on the psychological aspect of living with BWS
- limits of prenatal diagnosis
- involve specialists on new data collected regarding adults with BWS.
The novelty of thi event lies in being the first networking initiative on BWS at an international level, and in this lies the originality of a strong involvement of European and non-European patient associacions.
We therefore encourage peer-to-peer discussions between researchers, as well as a bottom-up workshop sessions between families and researchers.
+ 30 speakers
5 organizing associations
12 nations present
BWS Support Group UK
BWS Support Group UK representative and BWS dad
Aibws Odv admin
Aibws Odv admin and BWS mom
Dott.ssa Melissa Besana
AIBWS PRESS OFFICE
Aibws press office and BWS dad.
Hungarian support group
Hungarian support group representative and BWS mom
Dott. Marco Brega
Evaluation of subjects with secondary disorders of cleft lip and palate or other craniofacial anomalies (speech sound disorders, velo-pharyngeal insuflicienze).
Dott. Niccolò Butti
Dott. Diana Carli
Complex Structure Pediatric Oncohematology, Children’s Hospital Regina Margherita, City of Health and Science of Turin
Romanian support group
Romanian support group representative and BWS mom
Prof. Guido Cocchi
of the Clinic of Syndromology and Clinical Genetics since 02/10/1992
Founder of RONARD
Founder of RONARD (Romanian National Alliance for Rare Diseases).
Member of the EURORDIS Board of Directors.
Dott. Maurizio De Pellegrin
CHILD ORTHOPEDIC TRAUMATOLOGIST
Dott. Mario Ferrari
Prof. G. Battista Ferrero
President of the Wilms Foundation – Wilms warrior’s dad.
Bws Sverige representative and BWS mom.
Dott.ssa Jennifer Kalish
Program Director for BWS through the Orphan Disease Center. Researcher at the
Center for Childhood Cancer Research.
Dr. Pablo Daniel Lapunzina
Prof. Eamonn Maher
Dott. Lorenzo Marcucci
PRESIDENT oF ASEBEWI
Dott.ssa Donatella Milani
Dott. Rosario Montirosso
Psychologist and psychotherapist
Children of the IRCCS “E. Medea”
Dott. Alessandro Mussa
Pediatric Clinic of the Children’s Hospital Regina Margherita, City of Health and
Science of Turin
Dott.ssa Paola Quarello
Researcher at the department of pediatric oncohematology and Medical Director at the City of Health and Science of Turin.
Dott.ssa Angela Rezzonico
Prof. Andrea Riccio
Environmental, Biological and Pharmaceutical University of Campania
Dott.ssa Cecilia Rosso
Graduated in Medicine and Surgery from the University of Milan, in 2022 she obtained the specialization in Otolaryngology.
In 2021 you obtained the postgraduate university diploma for sleep disorders.
Since 2020 she has been pursuing a clinical research doctorate at the University of Milan.
Dott.ssa Silvia Russo
Coordinator of the Molecular Genetics section of the Cytogenetics Laboratory and Molecular Genetics
Dott. Gioacchino Scarano
Clinical Geneticist at the Medical Genetics Clinic Hospital Monaldi, AO of Colli
Dott.ssa Skórka Agata
Dott.ssa Pierpaola Tannorella
Laboratory geneticist at the Auxologico Italian Institute
Dott.ssa Domenica Taruscio
Director OF CNMR
Director of the National Center for Rare Diseases of the National Institute of Health (ISS)
Dott.ssa Chiara Tortora
Member of the scientific committee of AIBWS (Beckwith-Wiedemann syndrome) and member of SILPS (Italian society for the study and treatment of cleft lip-palate).
PRESIDENT OF AIBWS ODV
President of Aibws Odv and BWS mom
Dott.ssa Rosanna Weksberg
Science, University of Toronto
Dott.ssa Elena Zambrelli
Dott. Giuseppe Zampino
I’ll be there because…
Below you can consult the program for professionals and that for families, as well as a series of useful information on location, services and costs.
in the afternoon of 2 June, four workshops are planned to allow specialists and professionals to deepen the issues of their competence and evaluate a possible, proposed revision of the International Consensus based on new scientific evidence.
ECM CREDITS ARE NOT PROVIDED
Simultaneous translation will be active throughout the Congress (Italian/English and English/Italian)
Access to the Congress is free.
Program for professionals
Thursday, June 2nd, 2022
Moderators: Guido Cocchi e Gioacchino Scarano
|H. 9.00||Welcome and opening of the Congress – Guido Cocchi, Ferrari Mario ad Domenica Taruscio|
|H. 9.30||Who organized the Congress? – Monica Bertoletti|
|H. 9.45||Past, present and future- – Donatella Milani|
|H. 10.00||Coffee break|
Presentation of new studies/collected data on BWS management:
|H. 10.20||Therapeutic strategies in the treatment of heterometry of the lower limbs – Maurizio De Pellegrin|
|H. 10.50||Multidisciplinary approach for diagnosis, care and monitoring of macroglossy in children
with BWS – Smile House’s group
||Hepatoblastoma Screening strategies – Alessandro Mussa and Quarello Paola|
|H. 11.50||Neuropsychological skills and emotional-behavioural functioning associated with BWS:
preliminary data from an Italian study in school age children – Rosario Montirosso
|H. 12.10||Adults with Bws: presentation of new data collection – Lapunzina Pablo, Alessandro Mussa and
|H. 12.30||Circulating tumor DNA testing for children at increased risk of Wilms tumor – Rosanna Weksberg|
|H. 12.50||Clinical aspects of prenatal diagnosis in Beckwith-Wiedemann syndrome. What we are looking for? – Agata Skórka|
New proposals and future:
|H. 14.30||Roundtable: the international state-of-the-art – Eamonn R. Maher, Pablo Lapunzina, Jennifer Kalish, Giovanni Battista Ferrero, Agata Skórka, Rosanna Weksberg|
|H. 15.30||Room 1: Orthopedic workshop
Room 2: Maxillofacial workshop
Room 3: Cancer and follow-up screening workshop
Room 4: Prenatal Diagnosis workshop
|H. 17.00||Presentation of results from four workshops and proposal|
– Marcucci Lorenzo
– Tannorella Paola
– Third winner
Program for families
Thursday, June 2nd, 2022
|H. 18.00||Registration and aperitif for BWS Fathers|
|H. 20.00||Opening of the Congress – Guido Cocchi, Daniela Valle and Domenica Taruscio|
|H. 20.00||Gala dinner and award ceremony|
Friday, June 3rd, 2022
Moderators: Guido Cocchi and Gioacchino Scarano
|H. 09.00||Introduction – Pablo Martín|
Part 1: The ABC of BWS
|H. 09.10||Introduction to BWS and its characteristics – Donatella Milani|
|H. 09.30||Understand the basics of genetics – Pablo Lapunzina|
|H. 09.50||Limits of the molecular diagnosis and the prenatal diagnosis – Silvia Russo|
|H. 10.10||One, none and a hundred thousand: diagnoses in the same patient – Alessandro Mussa and Donatella Milani|
|H. 10.30||Coffee Break|
Part 2: BWS Management
|H. 10.50||Multidisciplinary treatment of macroglossia – Gruppo di lavoro Smile House|
|H. 11.20||Therapeutic strategies for heterometry treatment of the lower limbs – Lorenzo Marcucci, Maurizio De Pellegrin|
|H. 11.50||Oncological problems and specificities – Paola Quarello|
|H. 12.40||Reflections on the psychological dimension of living with BWS – Rosario Montirosso|
|H. 12.40||Questions to specialists|
Part 3: New knowledge and prospectives
|H. 15.00||Body representation, neuropsychological profile and socio-emotional development in children
with Bws – Niccolò Butti
|H. 15.20||A new approach to Wilms tumor surveillance – Rosanna Weksberg|
|H. 15.40||Genetic meets epigenetics in BWS – Andrea Riccio|
|H. 16.00||Multiple Loci Imprinting Defect (MLID): what it is, patients affected and the possible clinical implications – Silvia Russo|
|H. 16.20||Hyperinsulinism in the Bws – Evan Hathaway|
|H. 16.40||Assisted insemination and BWS – Giovanni Battista Ferrero|
|H. 17.10||Coffee break|
|H. 17.30||BWS in twins – Jennifer Kalish|
|H. 17.50||BWS in adults – Diana Carli|
|H. 18.10||Questions to specialists|
Saturday, June 4th, 2022
Moderator: Marco Bilancioni
Part 4: Living BWS in the world
|H. 09.00||A strange Christmas gift — G. Zampino and P. Cioara|
|H. 09.30||One for all, all for one!|
|H. 11.00||Coffee Break|
|H. 11.30||Leaving space to families|
|H. 12.30||Conclusions – Guido Cocchi, Daniela Valle|
• Relax on the beach, games for everyone
• Happy hour for mothers
• Evening in company
Because the convivial part is just as important as the scientific part.
INFORMATION ON THE CONGRESS VENUE
The entire congress will take place at Club Hotel Dante in Cervia
The Club Hotel Dante Cervia 4* offers concierge, room service, shopping, seasonal outdoor pool, sun terrace and library. The hotel is an Italian style complex with 244 classic rooms. You will also find luggage storage, elevator and a vending machine on the property.
Main local attractions in Cervia are the Federico Fellini Museum and Mirabilandia. The property is within a 10-minutes walk from the city center. Nearby you can also visit the Salt Museum (Cervia Sweet Salt is an integral sea salt that retains its natural moisture and is rich in trace elements). Cervia Milazzo bus stop is 350 meters from the Hotel.
Each room is equipped with individual climate control, flat-screen TV, a stereo system and private bathroom equipped with bathrobes.
Food & Drink
A continental breakfast is available every morning. Guests can enjoy a variety of regional dishes at the open-air restaurant. The hotel invites guests to the garden bar to relax over a drink.
The accommodation offers direct access to a private pool with poolside bar, whirlpool and sauna.
Equipped beach access SPIAGGIA 188 at 20 meters.
Wi-Fi is only availabre in public areas and is free.
Wired internet is available in the hotel rooms and is free of charge.
Free private parking is available on site.
Address: Viale Milazzo 81 ang. Lungomare Deledda 48015, Cervia (RA)
Services during the congress
For all children aged 3 and over
- from 4pm to 11pm on 2 june
- from 8.30am to 11pm on 3 june
- from 8.30am to 2pm on 4 june,.
Animators will speak English.
Except for special needs, both parents are asked to attend the congress and not to bring the children to the Congress Hall, this to allow the congress to operate regularly and optimally..
Snack for children
Every afternoon snakcs will be offered by Aibws.
Congress official languages are Italian and English. Simoultaneous translation will be available with headsets.
At the time of registration and for the duration of the congress, multilingual Hostesses will be present for any information or needs.
quotes are available for transfers from Bologna Airport or Central Station as well as from Cervia train station.
Mr. Stefano Morelli, professional photographer, will be present throughout the event to take institutional photos as well as individual family and/or group photos. Photos with the logo of the Congress will be available for purchase directly on site from Mr. Morelli.
Filming of the sessions is scheduled for everyday.
In addition, film maker Comert Kemal who has already worked with us on previous projects will be
present. His presence has been requested to film the most emotional parts of the first great BWS family meeting.
For a fee
Entrance to the SPA “Armonie Sensoriali” with 17 emotional showers, vascular path, Kneipp path, Finnish sauna, ice cave, thermal water pool with hydromassages and waterfalls, thermal swimming pool, relaxation areas with comfortable chaises-longues. Admission for 60 minutes at a cost of € 18.00 per person (possible rental of bathrobe at a cost of € 4.00 per person for each rental) you can also have treatments and massages. Remember costume, bathing cap, slippers and bathrobe!
- For weaning children, families may inform of their special needs during pre-registration
- Please inform during pre-registration of any special dietary needs (celiac, allergies, intolerance, vegetarian, etc.)
Costs and registration
Aibws thanks all the supporters and donors who are contributing to the expenses of organizing the Congress.
Do you want to help us too?
1) Doctors and families will have to fill in the form at https://2022.aibws.org/registration-information-sheet/ NO LATER THAN MAY 15TH, 2022
At the time of online registration, 30% of the cost must be paid directly to Club Hotel Dante:
c/c intestato a DANTEGEST SRL
SWIFT CODE CCRTIT2TRMB
Please specify reason for payment: Down payment Aibws congress stay, family/Doctor …………….
2) By April 30, each family/Doctor will receive an email containing confirmation of their preregistration and costs. Following the email, families must pay only the remaining balance directly to Club Hotel Dante NO LATER THAN MAY, 15TH 2022
The stay is FULL BOARD which includes the 3 meals per overnight night stay, with water and wine (beer and other drinks will be charged separately)
Single room: € 98,00 per night
Double room: € 130,00 per night
Junior suite supplement: € 80,00 per night
0-7 years old € 0,00
7-13 years old € 32,50 per night
13-18 years old € 52,00 per night
Required extra costs:
- Tourist tax (About 2/2,5€ per night per person for guests 14 years old and older, the Municipality of Cervia has not yet established the exact figure for the year 2022). People with disabilities and one of their companions are exempt with proof of documentation (at least 80% of disabilities).
- Meals for those without overnight stay € 28,00 per meal and € 14,00 per meal for children under 7 years old. No payment is due for the meals but pre-registration is necessary.
ALL costs to be paid directly on site to Club Hotel Dante
Event organized by
This Networking event has received funding from the European Union’s Horizon 2020 research and innovation programme under the EJP RD COFUND-EJP N° 825575
Find out more at European Joint Programme on Rare Disease website.
Realized with the help of
Con il contributo incondizionato di