Dear Families

The Board of Directors of Ring14 Italy has decided to plan for this year a meeting / congress dedicated to doctors and families of our association that will be held next October in Reggio Emilia Italy, with the following proposed program:

Saturday October 14, 2017 at Hotel Mercure Astoria

http://www.mercurehotelastoria.com/it/

9:00-10:00 Greetings and introduction

·  S. Azzali

·  Hospital / Local healthcare unit

·  Opening lecture: Complete healthcare of a patient suffering from a complex genetic syndrome: overview of clinical aspects (Benedicenti)

10:00-11:15 Session: Guidelines 1

·  Guidelines how and why (Crimi)

·  Diagnostic Approaches and Updates on Chromosome Re-Arrangements 14 (Rinaldi)

·  Neurological framework and pharmacological and non-pharmacological therapies (Rizzi)

11:15-11:45 Coffee break

11:45-13:00 Session: Guidelines 2

·  Gastroenterological problems, nutrition and celiac disease (Amarri)

·  Immunity and respiratory infections (Soresina)

·  Family experiences

13:00-14:00 Lunch break

14:00-16:00 Session: Guidelines 3

·  Rehabilitation and respiratory devices (Lusuardi)

·  Eye problems (Melli)

·  Motor and skeletal problems (Silvia Sassi)

·  Linguistic profile (Zampini)

·  Family experiences

16:00-16:30 Coffee break

16: 30-17: 30 Session: Scientific Research

·  Research Overview (New Approved Projects, International Developments) (Crime)

·  Projects funded by Ring14 (Vezzani)

·  Support of research institutions on rare diseases (Taruscio)

17:30-18:00 Final discussion

Dinner all together and return to the Hotel for overnight stay17:30-18:00

Sunday, October 15 At the Ring14 Italia headquarters in Via Gioia 5 in Reggio Emilia

09.00-12.30 Family Workshop with Dr. Casarini, a researcher and expert at ABA (Applied Behavior Analysis), to address everyday issues: behavioral problems, autonomy development, motor and verbal stereotypes, sleep and nutrition problems and any issues directly requested by families.

13:00-14:00 Lunch break

In the afternoon there is time to get acquainted while the Ring14 International delegates will meet with Dr. Crimi's Scientific Coordinator to plan future initiatives.

ORGANISATION:

For families arriving from aboard hotel arrangements can be made for 13 October with a departure on Monday 16 October

Traveling cost and hotel accommodations are to be paid by the families (please see hotel rates in the booking form)

We have invited medical specialists and researchers who are very familiar with the diseases of our children and are available to answer all of your questions.

Meals included in the program will be offered by the association at hosting facilities that will also offer entertainment activities.

Participants will stay at the Hotel Mercure Astoria because, apart from being particularly helpful and welcoming and having offered us very good rates, it is a beautiful building in the city center, with large open enclosed spaces, which will allow us to carry out our play activities.

For those arriving at the train station or airport we will arrange transfers to and from the Hotel.

During the congress, a volunteer service wil stay and entertain with your children.

Medical examinations and blood and tissue samples will be performed. Samples will be sent to our Bio Bank for anyone who has not done so yet.

The only obligation to attend this event is to pay the membership fee to Ring14 Italia of 25 € per family.

For families coming from abroad, Ring14 Interntional will offer an English simultaneous translation service.

We know that the congress event is still a long time away but in order to better organize this event, we need your cooperation and receive your reservations as soon as possible.

Here attached you will find the booking form which I ask you to fill out and send by fax to + 39 0522 085605 or email to

For more information call me at +39 3408681962.

I really hope to meet you here in Reggio Emilia and I am available for any further clarification.

Best Reagards.

Stefania Azzali

President Ring14 Italy

APPLICATION FORM
Name: / Last name:
Address:
Street: / Post code: / City:
Telephone: / Country:
e-mail: / Fax:
N. Participants: ADULTS:………CHILDREN 3/15 YEARS:…………INFANTS 0/2 YEARS:……...
Specify name, last name and date of birth (only for children and infants) of all the participants
NAME LAST NAME DATE OF BIRTH
…………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………
…………………………………………………………………………………………………………………
SPECIFIC REQUESTS:
Need a wheelchair si no
Nutrition problems si no
Other special needs:
…………………………………………………………………………………………………………………………………………………………………………………………………………………………………………
Booking in hotel:
13 october 14 october 15 october
Room prices per night with breakfast included (prices are per room per night)
single (70€) double (80€) triple/quadruple (120€)

Rooms are to be paid upon confirmation directly to Ring14 Italia IBAN:

IT 33 G 02008 12827000101793084, addressed to RING14 ITALY ONLUS - Via Flavio Gioia 5 - 42124 Reggio Emilia – Italy. BIC SWIFT: UNCRITM157V

Or by credit card to the link: http://www.ring14.it/donazione.php?v=15

WE WILL ARRIVE BY:
car
train arrival station: time of arrival: train number:
departure station: time of departure: train number:
plane arrival airport: time of arrival: flight number:
departure airport: time of departurel: flight number:
Consent for processing of personal data
Under the law 675/96, I authorize the processing of my personal data for the sole purpose of the successful outcome of this conference
Signature

To help us better organize your stay, please kindly send this form by fax or email to the organizing secretariat as soon as possible and by September 1, 2017

2

Sede legale: Via Victor Marie Hugo 34 – 42123 Reggio Emilia

Sede operativa: Via Flavio Gioia 5 – 42124 Reggio Emilia

- www.ring14.it - Tel. +39 0522 421037