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ASOCIATIA PRADER WILLI DIN ROMÂNIA
în parteneriat cu:
ORGANIZATIA INTERNATIONALA PRADER WILLI, ASOCIATIA PRADER WILLI NORVEGIA, CENTRUL DE BOLI RARE FRAMBU – NORVEGIA si Disciplina de GENETICA MEDICALA a Universitatii de Medicina si Farmacie V. BABES, TIMISOARA
organizeaza:

A doua Conferinta Est-Europeana în Sindromul Prader Willi
The 2nd Eastern European Conference on Prader Willi Sindrom

Perioada de desfasurare: 29- 30 octombrie 2010, Zalau

Locatia conferintei si cazarea la Grand Hotel Severus

Coordonatori: Dorica Dan, Prof. Dr. Puiu Maria si Dr. Susanne Blichfeldt


Download registration form:
Descarcati formularul de inscriere:

    Formular_EE_PWS.pdf     -     Formular_EE_PWS.doc



Ziua 1 - 29 octombrie 2010

08.00 - 09.00

INREGISTRAREA PARTICIPANTILOR

09.00 - 09.30

DESCHIDEREA CONFERINTEI
Cuvant de bun venit si introducere ( APWR si Autoritatile locale)
prezideaza - Dorica Dan

09.30 - 12.00

NOUTATI IN SPW
Prezideaza Giorgio Fornasier, Italia, CEO IPWSO Stiri de la Conferinta IPWSO Taiwan, Mai 2010

09.30 - 11.00

Masa rotunda:
Dr. Susanne Blichfeldt – Danemarca,
Prof. Dr. Antony Holland, Cambridge, Marea Britanie,
Hubert Soyer, Germania;

11.00 - 12.00

Sanatatea generala in SPW
Dr. Susanne Blichfeldt, Danemarca Intrebari si raspunsuri

12.00 - 12.30

PAUZA DE CAFEA. Vizionare postere

12.30 - 14.00

ASPECTE PARTICULARE IN SPW
– prezideaza Dr. Susanne Blichfeldt, Danemarca, prof. Dr. Maria Puiu UMF Timisoara

PARTEA I
• Genetica, epigenetica - Prof. Dr.Maria Puiu; Conf. dr. Cristina Rusu; Natalia Cucu;
• Abordarea citogenetica ante si postnatal - Conf. Dr.Vlad Gorduza;
• Endocrinologie - Conf. Dr. Corin Badiu
• Neurologie - Violeta Stan, Simona Dumitriu

14.00 - 15.00

PRANZ

15.00 - 16.30

ASPECTE PARTICULARE IN SPW
– prezideaza Arnesen Ragnhild, PWA Norvegia, Conf. Dr.Vlad Gorduza

PARTEA a IIa
• Diabetul si obezitatea - Dr. Aurelia Szekely
• Particularitati ortopedice - Prof. dr. Calin Popiu, Dr. Vlad David;
• Apnea de somn - Dr. Mihaicuta Stefan
• Terapia cu hormon de crestere - Conf. Dr. Otilia Margineanu

Intrebari si raspunsuri

16.30 - 17.00

PAUZA DE CAFEA. Vizionare postere

17.00 - 19.00

ABORDAREA INTERDISCIPLINARA
- prezideaza Prof. Dr.Tony Holland, Kaja Giltvedt, Frambu

• Psihiatrie – Prof. Dr. Tony Holland, Universitatea Cambridge, Marea Britanie
• Activitati fizice in SPW - Kaja Gildvet, Frambu - Norvegia
• Management nutritional - Corina Duncescu, Adela Chirita
• Interventii educationale si psihologice: APWR

Intrebari si raspunsuri

19.00

CINA

Ziua 2 - 30 octombrie 2010

09.00 - 10.00

WORKSHOP - STRATEGII PENTRU SANATATE

09.00 - 10.00

Strategii nationale pentru bolile rare si SPW
– prezideaza Christel Nourisier, Franta,
BoD EURORDIS, membru EU CERD;
- Dezbaterea publica cu tema NPRD tarile EE

10.00 - 10.30

PAUZA DE CAFEA

10.30 - 13.30

SCHIMBARI PE PARCURSUL VIETII
– prezideaza Anna SI Giuseppe Baschirotto, BIRD Italia , Dr. Ioana Rotaru – Fundatia ACASA;
• Diagnosticul precoce in SPW
• Pregatiri pentru scoala, training pentru profesori
• Reabilitare si stimulare permanenta
• Tranzitia catre viata adulta
• Locul de munca si SPW
• Probleme Psihpologice si psihiatrice la adulti
• Activitatile fizice si dieta – un mod de viata

13.30 - 14.30

PRANZ

14.30 - 16.30

EXPERIENTA IN EUROPA
- prezideaza Lisen Julie Mohr, Frambu, Norvegia
– modalitati de lucru in echipa
EXEMPLE DE BUNE PRACTICI:

• Norvegia (FRAMBU)
• Italia(BIRD)
• Grecia
• Romania
• Danemarca
• Franta
• Germania
• Italia
• Bulgaria
• altele;

16.30 - 17.00

PAUZA DE CAFEA

17.00 - 18.00

CONCLUZII


Deadline for registration: 10th October 2010
Registration and information are open on the following website:
http://www.apwromania.ro

ABSTRACTS
Authors are invited to write and submit abstracts for oral and poster presentations according to the following instructions:


Instructions for writing abstracts

-  abstracts must be submitted in English
-  abstracts should not exceed 250 words
-  font should be Times New Roman, size 10 pts
-  title of the abstract should be written in capital letters (size 12 pts, Times New Roman)
-  authors: start a new line and write the last name and first name initial for all authors without titles; underline the name of the presenting author
-  start a new line and write the name of the institution, city and country for all authors
-  then write down the e-mail address of the author presenting the paper
-  abstracts should consist preferably of: aim of the study, methods, results and conclusions
-  your abstract will be published exactly as submitted (linguistic accuracy is the responsibility of the author)
-  accepted abstracts and full-text presentation will be published in the supplement of Journal of Paediatrics

Instructions for submitting abstracts

-  online submission: office@apwromania.ro
-  abstracts submitted by fax will not be accepted

Submission Deadline extended to September, 30, 2010

Notification of Acceptance of Abstracts will be sent electronically to the corresponding author by
October 5, 2010

Instructions for Speakers and Poster Presenters
Oral presentations
Invited speakers: 20 minutes plus 5 minutes discussion
Presentation time: 10 minutes plus discussion
Technical equipment
LCD projector will be available for oral presentation.
Speakers are kindly asked to submit their computer presentations one day or at least two hours before their lecture in the preparation room and give them to the technician.
Preparation room will be open daily from 8:00 am to 7:00 pm.
Poster presentations
Posters must be written in English.
Poster dimensions: max. 80 cm (width) x 120 cm (height)
Posters will be displayed in the congress area on poster panels. The authors should bring posters in person. Supplies for poster mounting will be provided by the Congressional Service.

 

ZALAU
Placed in north-western Romania, at the crossing between Eastern Carpathians and the Apuseni Mountains, Salaj county was known as Sylvania County ( i.e. the County of Woods). With an area of 3 850 sq. km., its neighbors are Satu-Mare and Maramures counties in the north, Bihor county in the west and south-west and Cluj county in south-east. Placed in the centre of the county it is the administrative residence of the Salaj county.

It is situated close to the border with the former Roman Empire, more precisely 8 km from the Roman camp of Porolissum- the strongest fortress in north-western Roman Dacia.

During the medieval times the town represented the passage between Central Europe and Transilvania, through the well-known " salt road".
Today the town is connected to the European road on the axis Cluj- Satu-Mare- Petea Vama, DN1F-E81.
Apart from its economic importance, it is a powerful cultural educational and touristic centre. It is not long since, apart from the well-known schools and high schools, two more colleges have been authorized to carry on their activities in the town.

Being a municipal town of the county, Zalau is also its cultural centre. The cultural events take place in the Union Culture House, the Municipal Cultural House, The " Ionita Scipione Badescu " LIbrary, the History and Arts Museum, " Ioan Sima' Gallery as well as in the cinema hall of the town.

Zalau also possesses a Documentary Library created in 1646 within the Reformed College. Today the library owns more than 40.000 books of which a good part are very rare or even unique. Among the writers one could mention the ancient Greeks- Homer, Platon, Aristotel, Plutarch, Dyionisus of Halicarnas, Ptolemeu and Plinius Secundus or the writers Erasmus of Rotterdam, Calvin, Descartes as well as other writers of the time. Latest research has revealed 7 Dutch sole exemplars, documents belonging to the 17th and 18th centuries (The " Ionita Scipione Badescu" County Library).

History:
The media of the time recorded the inauguration - on the 23 th August 1950- of a " Central Library" owning 7000 Roman and Hungarian books. Among other personalities, Rodica Fanateanu, Elena Fanateanu, Karl Kun and many others were present. The collections comprise very old books like Petrarca's " De remediis" ( 1649). In 1952 it became " District Library" , coordinating all the Salaj county libraries.
In 1957 took the name of the Salaj scholar Ionita Scipione Badescu.

It became " County Library" in 1968. Throughout the times it functioned in the Municipal Cultural House building, in the former Museum location, in the building of the today's Bookstores Centre and since 1971 in the building on the Iuliu Maniu Square no. 13. It possesses at the moment more than 160.000 books.
Cultural institutions
Among the most representatives the following institutions are to be mentioned:
The Salaj County Cultural, Cults and National Cultural Heritage Control, The Zalau County Arts and History Museum, The "Ionita Scipione Badescu" County Library, The Popular School of Arts and Trades, The Salaj Centre for the Valorization and Promotion of the Traditional Culture, The Zalau Cultural House of Unions. We are waiting you to learn together about PWS and to enjoy the beauties of this Transylvanian town.


We are looking forward to welcome you again in Romania!

Dorica Dan – president RPWA

 

 
 
 

Asociaţia Prader Willi din România
Zalău, Sălaj, România
Centrul Pilot de Referin?ă pentru Boli Rare „NoRo”
Str. 22 Decembrie 1989, Nr. 9
Tel./Fax: 0040.260.610033
Mobil: 0040.735.858.667
E-mail: office@apwromania.ro

Centrul de Informare pentru
Boli Genetice Rare

Str. Avram Iancu Nr. 29
Tel./Fax: 0040-260.611214
E-mail: office@apwromania.ro

IPWSO
Organizaţia Internaţională Sindromul Prader Willi
Plan National de Boli Rare     ---     Romanian National Plan for Rare Diseases
This site is hosted with the financial help of the Royal Netherlands Embassy in Bucharest through the Matra -Kap Programme.
Direcționați 2% din impozitul pe venit la Asociația Prader Willi din România pentru a susține activitățile noastre.
Descărcați formularul 230 cu datele APWR.
Vă mulțumim!

29-30 OCTOBER 2010
2nd Eastern European Conference on PWS
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Servicii Sociale Acreditate
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AGORA - Asociatii de pacienti
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NOUTATI:

Calendarul Cursurilor 2011

Revista ˜Oameni RARI si Bolile RARE˜

              

              

              

              

        

CONFERINŢE
(click aici pentru detalii...)
RAPORT DE EVALUARE
► raport final (XLS) ► Cerere (DOC) ► Chitanta (JPG)
   ► 2007_budget_1 (JPG) ► 2007_budget_2 (JPG) ► 2007_budget_3 (JPG)
   ► 2007_budget_4 (JPG) ► 2007_budget_5 (JPG) ► 2007_budget_6 (JPG)
   ► 2007_budget_7 (JPG) ► 2007_budget_8 (JPG)
   Linkuri utile:

      - Film realizat de Pagina medicala la Centrul NoRo (http://www.paginamedicala.ro/video/Se-cauta-finantare-pentru-singurul-centru-de-boli-rare-din-Romania_1049/)
      - Blog Boli Rare (Activitati Boli Rare Romania)
      - Tabara Bobota Poze 2009 (Tabara Nationala pentru Tineri cu Disibilitati "5 Zile de Vis" Asociatia Werdnig Hoffman din Carei si Asociatia Prader Willi din Romania)
      - Fundatia Acasa (Recuperarea, tratamentul si ingrijirea persoanelor in cadrul celor trei componente: *componenta locomotorie (fizioterapie, kinetoterapie, hidroterapie, ergoterapie, logopedie, etc); *componenta A.D.L. (recuperarea functiilor pentru activitatea de zi cu zi); *componenta de socializare (informarea, consilierea, asigurarea aptitudinilor, informatiilor, cunostintelor si deprindelor necesare pentru o viata normala).)
      - FRAMBU Norway (FRAMBU Resource Centre for Rare Disorders)
      - Corpul Pacii Romania (Peace Corps Romania)
      - Ziua Bolilor Rare Poze (Poze din Ziua Bolilor Rare 2009)
      - Ziua Bolilor Rare (blog ziua bolilor rare)
      - Unimpresa Romania ( “Patronat” recunoscut de către Guvernul român încă din octombrie 2004 (firme româneşti cu capital parţial sau in totalitate italian). )
      - Reteaua Info-sanatate (Retea neconventionala de distributie presa si materiale informative gratuite in centrele de sanatate din Romania, lansata in luna mai 2007.)
      - Marijke Foundation (NL/EU). (Arterita cu celule gigante •Arterita temporala)
      - Rare Disease Day (Visit the Rare Disease Day Website)
      - Asociaţia Română de Hemofilie (Prima asociaţie care a pornit lupta pentru binele hemofilicilor şi singura din România recunoscută pe plan internaţional. )
      - Suport Medical pentru Controlul Hidrocefaliei (Imbunătăţirea circuitului de îngrijire pentru copii afectaţi de hidrocefalie, prin crearea unei reţele de centre-partenere în ţară (spitale de neurochirurgie, pediatrie, obstetrică-ginecologie), împreună cu care vor fi evaluate şi identificate soluţiile cele mai eficiente pentru depistarea precoce a hidrocefaliei, fie prin examinările prenatale, la naştere sau prin stabilirea unui program de monitorizare a copilului cu risc. )
      - ASOCIATIA NATIONALA MIASTENIA GRAVIS ROMANIA (Asociatia Nationala Miastenia Gravis Romania este organizatia non-profit, umanitara ce are drept scop apararea drepturilor si intereselor persoanelor afectate de miastenia gravis si imbunatatirea calitatii vietii acestora. )
      - Asociatia Haemophilia Romania (- suport pentru pacientii diagnosticati cu hemofilie)
      - ASOCIATIA PKU LIFE ROMANIA (- protectia eprsoanelor afectate de PKU.)
      - ASOCIATIA INIMA COPIILOR (- pentru sprijinirea cpiilor cu problme cardiace)
      - ASOCIAŢIA MEDICALĂ ALEXIA (- activităţi medicale în domeniul următoarelor specialităti-genetică, pediatrie, cardiologie, neuropsihiatrie, imagistică medicală, laborator clinic )
      - Asociatia copiilor cu nevoi speciale Dr. Katz (sindromul Little Morbi)
      - Fundatia pentru protectia adultilor cu boli cardiace congenitale (o viata mai buna pentru persoanele cu boli cardiace congenitale)
      - Asociatia Distroficilor muscular din Romania (persoane cu handicap neuromuscular )
      - Asociatia Sindrom Down (pentru copii si tinerii cu Sindrom Down)
      - Asociatia Copiii de Cristal (integrarea socială a copiilor cu tulburări pervazive de dezvoltare.)
      - Salvati Copiii Timis (servicii de sprijin pentru copii.)
      - Reţeaua Româna de Angioedem Ereditar! (Angioedemul ereditar (AEE) este o boală condiţionată genetic.)
      - SOCIETATEA DE SCLEROZA MULTIPLA DIN ROMANIA (pentru pacientii cu scleroza multipla)
      - ASOCIAŢIA WILLIAMS SYNDROME ROMÂNIA (pentru sprijinul persoanelor cu sindrom Williams )
      - Lansare campanie la Zalau (29 Februarie 2008- The 1st European Rare Diseases Day)
      - ASOCIATIA MINI DEBRA (sediu: Turda, jud. Cluj)
      - ORPHANET EUROPE (newsletter)
      - EUROGENTEST/ PLIANTE (Materiale informative privind testarea genetica)
      - Special Olimpys 2007 (APWR a organizat la 20 noiembrie editia a doua a proiectului "Integrare prin sport" finantat de Consiliul Local Zalau.)
      - Asociatia Aglutena (Moto: Când pâinea noastră cea de toate zilele, ne îmbolnăveşte. )
      - Conferinta de boli rare, Zalau, 2-3 Noiembrie 2007 (Bolile rare - de la evaluarea nevoilor la stabilirea prioritatilor)
      - Poze Conferinta Cluj (Photos from the PWS Conference/ June 2007 )
      - Postere (Postere de Asociatia Prader Willi din Romania)
      - ASOCIACIÓN MADRILEŃA SINDROME DE PRADER WILLI (Materiale prezentate in cadrul conferintei de la Cluj Napoca)
      - Ghidul pacientului (Redactia Ghidul Pacientului)
      - Proiect Eurordis (Programul European FP6)
      - TRIMA EVENTS (Event organizer/ Organizator de evenimente)
      - EURORDIS (European Organization for Rare Diseases)
      - SIMBOTOURS ( Agentia de turism SIMBOTOUR - Satu Mare)
      - ICRDOD Bulgaria (Information Center for Rare Diseases and Orphan Drugs Bulgaria)
      - Kindness for Kids Germany (Kindness for Kids Germany)
      - SWB Germany (Social Work Buildings Germany)

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