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.

Program

Register

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.

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+ 30 speakers

5 organizing associations

4 workshops

12 nations present

Speakers

Robert Baker

BWS Support Group UK

BWS Support Group UK representative and BWS dad

Monica Bertoletti

Aibws Odv admin

Aibws Odv admin and BWS mom

Dott.ssa Melissa Besana

DENTIST, ORTHODONTIST

Graduated in Dentistry and Dental Prosthetics at the University of Milan Bicocca, extensive experience in Pedodontics and Orthodontics. She has collaborated with research groups of Orthodontists, Speech Therapists and Maxillofacial Surgeons with works also presented internationally.

Marco Bilancioni

AIBWS PRESS OFFICE

Aibws press office and BWS dad.

Zsuzsanna Bógnar

Hungarian support group

Hungarian support group representative and BWS mom

Dott. Marco Brega

SPEECH THERAPIST

Smile House -ASST Santi Paolo e Carlo, Milan.
Evaluation of subjects with secondary disorders of cleft lip and palate or other craniofacial anomalies (speech sound disorders, velo-pharyngeal insuflicienze).
Research activity.

Dott. Niccolò Butti

Psychologist

Psychologist and psychotherapist. He is a collaborator of the Centre 0-3 for the child at Risk evolutionary of the IRCCS “E. Medea” – PhD student in neural and cognitive sciences, Department of Life Sciences, University of Trieste.

Dott. Diana Carli

CLINICAL GENETIST

Department of Public Health and Pediatric Sciences, University of Turin.
Complex Structure Pediatric Oncohematology, Children’s Hospital Regina Margherita, City of Health and Science of Turin

Paula Cioara

Romanian support group

Romanian support group representative and BWS mom

Prof. Guido Cocchi

PEDIATRICIAN

Head of the Centre for the Study of Congenital Malformations since 1988 and
of the Clinic of Syndromology and Clinical Genetics since 02/10/1992

Dorica Dan

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

Head of the Child Orthopaedics Service at the San Raffaele Hospital in Milan.

Dott. Mario Ferrari

Maxillofacial surgeon

Maxillofacial surgeon at the Smile House at the San Paolo Hospital in Milan.

Prof. G. Battista Ferrero

PEDIATRician

General paediatrics at the complex structure at the Pediatric University Directorate I, of the Regina Margherita Children’s Hospital

Evan Hathaway

GENETIC COUNSELOR

Genetic Counselor Beckwith-Wiedemann Syndrome Clinic – Children’s Hospital of Philadelphia

TJ Hodgkinson

Wilms Foundation

President of the Wilms Foundation – Wilms warrior’s dad.

Linda Jacobbson

Bws Sverige

Bws Sverige representative and BWS mom.

Dott.ssa Jennifer Kalish

Researcher

Program Director for BWS through the Orphan Disease Center. Researcher at the
Center for Childhood Cancer Research.

Dr. Pablo Daniel Lapunzina

medical surgeon

Scientific Director of CIBERER, Rare Diseases Biomedical Research Network Center and Head of Research Group of INGEMM-IdiPAZ.

Prof. Eamonn Maher

research geneticist

Eamonn Maher is Professor of Medical Genetics and Genomic Medicine and Head of the Department of Medical Genetics.

Dott. Lorenzo Marcucci

orthopedist

Doctor in Specialist Training in Orthopaedics and Traumatology, University of Verona – Winner of 1st prize “Simone Casapieri”

Pablo Martìn

PRESIDENT oF ASEBEWI

President of ASEBEWI and BWS dad.

Dott.ssa Donatella Milani

CLINICAL GENETIST

Geneticist Doctor, Head of Pediatric Genetic Clinic at Pediatrics High Intensity Care Foundation IRCCS

Dott. Rosario Montirosso

Psychologist and psychotherapist

Psychologist and psychotherapist. Head of Center 0-3 for the at-risk evolutionary
Children of the IRCCS “E. Medea”

Dott. Alessandro Mussa

Pediatrician

Medical Director and Associate Professor at the Pediatric Institute II, Genetics
Pediatric Clinic of the Children’s Hospital Regina Margherita, City of Health and
Science of Turin

Dott.ssa Paola Quarello

oncologist

Researcher at the department of pediatric oncohematology and Medical Director at the City of Health and Science of Turin.

Dott.ssa Angela Rezzonico

SPEECH THERAPIST

Head of the speech therapy service at the Smile House in Milan

Prof. Andrea Riccio

research geneticist

Full Professor of Genetics BIO/18 at the Department of Science and Technology
Environmental, Biological and Pharmaceutical University of Campania
“Luigi Vanvitelli”

Dott.ssa Cecilia Rosso

otolaryngologist

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

laboratory geneticist

Coordinator of the Molecular Genetics section of the Cytogenetics Laboratory and Molecular Genetics

Dott. Gioacchino Scarano

clinical geneticist

Clinical Geneticist at the Medical Genetics Clinic Hospital Monaldi, AO of Colli
Napoli

Dott.ssa Skórka Agata

PEDIATRician

MD, PhD -Department of Pediatrics The Medical University of Warsaw and Department of Medical Genetics The Children’s Memorial Health Institute

Dott.ssa Pierpaola Tannorella

laboratory geneticist

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

ORTHODONTIC CONSULTANT

Orthodontic consultant at the SMILE HOUSE, regional center for cleft lip-palate, Santi Paolo e Carlo Hospital, Milan.
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).

Daniela Valle

PRESIDENT OF AIBWS ODV

President of Aibws Odv and BWS mom

Dott.ssa Rosanna Weksberg

CLINICAL GENETIST

Division of Clinical & Metabolic Genetics/Research Institute, The Hospital for Sick Children; Depts of Paediatrics and Molecular Genetics, Institute of Medical
Science, University of Toronto

Dott.ssa Elena Zambrelli

CLINICAL NEUROPHYSIOLOGIST

San Paolo Hospital – University Center | AO-San Paolo, Department of Mental Health

Dott. Giuseppe Zampino

PEDIATRICIAN

Director of UOC Pediatrics and coordinator of the Rare Diseases Units of the “A. Twins”

I’ll be there because…

PROGRAM

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.

WORKSHOPS
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. 8.30	Registration
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
H. 11.30	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 Jennifer Kalish
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
H. 13.00	Lunch

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
H. 18.00	Conclusions

Gala dinner

Gala dinner and Dissertation presentations of the “Simone Casapieri” Graduation Award recipients
– 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
H. 13.00	Lunch

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
H. 13.00	Lunch

In the afternoon:
• 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

Congress location

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.

Location
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.

Rooms
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.

Relax
The accommodation offers direct access to a private pool with poolside bar, whirlpool and sauna.
Equipped beach access SPIAGGIA 188 at 20 meters.

Internet
Wi-Fi is only availabre in public areas and is free.
Wired internet is available in the hotel rooms and is free of charge.

Parking
Free private parking is available on site.

Map
https://www.clubhoteldante.it/dove_siamo
Address: Viale Milazzo 81 ang. Lungomare Deledda 48015, Cervia (RA)

Services during the congress

Animation
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.

Interpreters
Congress official languages are Italian and English. Simoultaneous translation will be available with headsets.

Hostess
At the time of registration and for the duration of the congress, multilingual Hostesses will be present for any information or needs.

Shuttle
quotes are available for transfers from Bologna Airport or Central Station as well as from Cervia train station.

Photographer
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.

Video
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!

PLEASE NOTE:

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?

DONATE NOW REGISTER

Pre-registration deadlines:

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:
ROMAGNA BANCA
IBAN IT92M0885223601008010284636
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

Children:
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

Aibws - organizzatore 1 - parte 8 del sito

Asebewi - organizzatore 2 - parte 8 del sito

Huferdis - organizzatore 4 - parte 8 del sito

Anbraro - organizzatore 5 - parte 8 del sito

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.