6th International Prader-Willi Syndrome Scientific Conference


- TRUST OF TRUST

TRUST OF TRUST
Aceast TRUST OF TRUST isi propune actiuni de responsabilizare sociala a companiilor in sprijinul pacientilor cu boli rare din Romania. Toti cei care se decid sa devina membrii ai acestui TRUST se vor organiza intr-o formula: club, platforma, etc. (la decizia membrilor fondatori) si o sa-si aleaga o structura de conducere: presedinte, vicepresedinte, trezorier.
Trustul va avea conducere, cont separat, asigurand vizibilitate si transparenta privind colectarea si utilizarea fondurilor. Vor fi organizate intalniri semestriale cu APWR pentru analiza nevoilor, evaluarea rezultatelor si propuneri de proiecte comune. APWR isi propune sa promoveze pe situl organizatiei, in amterialele de promovare si informare privind proiectele derulate in parteneriat imaginea finantatorilor si contributia acestora.
Sponsorii evenimentului sunt: SC Transimont SRL, SiderProgetti, U.Jet.
Info – Sanatate sprijina evenimentul TRUST OF TRUST.





- TRUST OF TRUST



Download file: Invitatie print.pdf




- CONFERENCE REPORT

348 participants from 38 countries....

Download file: report.ppt




- Alex´s Speech






- Relationship between Prader-Willi Syndrome (PWS) and Sibling Ability (IQ)

Presentation Summary

Joyce Whittington, Tony Holland, Tessa Webb

Download file: VIConfRO_p38.pdf




- Has Gut – Derived Hormone PYY 3-36 A Causative Role in Hyperphagia and Obesity in PWS?

Presentation Summary

Various Authors

Download file: VIConfRO_p37.pdf




- Repetitive Behaviour and Executive Functions in Prader-Willi Syndrome and in Autism Spectrum Disorders

Presentation Summary

Jeni Tregay, Jane Gilmour, Tony Charman

Download file: VIConfRO_p36.pdf




- Abilities in Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p35.pdf




- Autistic Symptomatology, PWS and its Derivations for Treatment

Presentation Summary

Various Authors

Download file: VIConfRO_p34.pdf




- Quality of Life and Psychological Well-Being in GH-Treated, Adult PWS Patients: A Longitudinal Study

Presentation Summary

Various Authors

Download file: VIConfRO_p33.pdf




- Patient Child Relationship in Prader-Willi Syndrome: A Narrative Study

Presentation Summary

Various Authors

Download file: VIConfRO_p32.pdf




- Behavioural Problems in Individuals with Prader-Willi Syndrome

Presentation Summary

Engela M. Honey

Download file: VIConfRO_p31.pdf




- Cognitive Behavior Therapy (CBT) for a Young Man with PWS

Presentation Summary

Tomoko Hasegawa

Download file: VIConfRO_p30.pdf




- Clinical Features and Psychological Profiles of Prader-Willi Syndrome: Comparison of Genetic Subtypes in 18 Patients

Presentation Summary

Various Authors

Download file: VIConfRO_p29.pdf




- Examining the Nature of Functional Architecture Support for Visuo Spatial Working Memory Task Performance in Prader-Willi Syndrome

Presentation Summary

Laura E. Grayson and Colin J. Hamilton

Download file: VIConfRO_p28.pdf




- Individuals with Prader-Willi Syndrome and their Perception of Skin Picking

Presentation Summary

Various Authors

Download file: VIConfRO_p27.pdf




- Psychosis in Children with Prader-Willi Syndrome: A Case Study

Presentation Summary

Various Authors

Download file: VIConfRO_p26.pdf




- Psychopathologic Disorders and Self Injury in Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p25.pdf




- Correlation Study of Cognitive Profile and Adaptive Behavior in Prader-Willi Syndrome Patients According to Etiology

Presentation Summary

Various Authors

Download file: VIConfRO_p24.pdf




- DNA Extraction from Dried Blood Spots and Methylation Test for Diagnosis of Prader-Willi Syndrome Patients

Presentation Summary

Various Authors

Download file: VIConfRO_p23.pdf




- Sexual Behavior in Adolescents and Adults with Prader-Willi Syndrome

Presentation Summary

Barbara Y. Whitman, PhD

Download file: VIConfRO_p22.pdf




- Gait Analysis in Adult Patients with Prader-Willi Syndrome: A Cross-sectional Comparative Study

Presentation Summary

Various Authors

Download file: VIConfRO_p21.pdf




- Nursing of Adult Patients with Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p20.pdf




- Beneficial Effect of Early Use of Growth Hormone in Patients with Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p19.pdf




- Importance of the Minor Criteria for a Positive Clinical Diagnosis of Prader Willi Syndrome Patients

Presentation Summary

Various Authors

Download file: VIConfRO_p18.pdf




- Ageing in People with Prader Willi Syndrome (PWS)

Presentation Summary

Various Authors

Download file: VIConfRO_p17.pdf




- Gastric Necrosis is Associated with Normal BMI in Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p16.pdf




- Pain Threshold Impairment in Prader-Willi Syndrome: A Neurophysiological Study

Presentation Summary

Various Authors

Download file: VIConfRO_p15.pdf




- Somatic and Behavioral Difference in Children with Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p14.pdf




- Growth Hormone Effect on Muscle Volume and Scoliosis in Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p13.pdf




- Hormone Replacement in Adolescents and Adults with Prader-Willi Syndrome

Presentation Summary

Georgina Loughnan, Janet Franklin, Kate Steinbeck, MD

Download file: VIConfRO_p12.pdf




- Assessment of Accessibility to and Quality of Health and Social Services for Patients with Prader-Willi Syndrome in Italy and Romania

Presentation Summary

Various Authors

Download file: VIConfRO_p11.pdf




- The European Prader Willi Syndrome Clinical Research Database

Presentation Summary

Various Authors

Download file: VIConfRO_p10.pdf




- Central Hypothyroidism (CH) in Patients with Prader-Willi Syndrome During the First 2 Years of Postnatal Life

Presentation Summary

Various Authors

Download file: VIConfRO_p09.pdf




- Polysomnography in Adult Individuals with Prader-Willi Syndrome Treated with GH

Presentation Summary

Various Authors

Download file: VIConfRO_p08.pdf




- Cross-Cultural Comparisons of Obesity and Spontaneous Growth in France, Germany, USA, and UK

Presentation Summary

Oenone Dudley, Francoise Muscatelli, PhD

Download file: VIConfRO_p07.pdf




- Evaluation of Osteoporosis in Women with Prader-Willi Syndrome

Presentation Summary

Various Authors

Download file: VIConfRO_p06.pdf




- Multidisciplinary Management of Children with Prader-Willi Snydrome in the French Database of PWS

Presentation Summary

Various Authors

Download file: VIConfRO_p05.pdf




- Multiform Hypogonadism in Male Patients with Prader-Willi Snydrome

Presentation Summary

Various Authors

Download file: VIConfRO_p04.pdf




- Effects on Scoliosis in Four Patients with Prader-Wili Syndrome Treated with Growth Hormone for Five Years

Presentation Summary

Various Authors

Download file: VIConfRO_p02.pdf




- A Boy with Klinefelter Syndrome and Prader-Willi Syndrome: A Clinical Report

Presentation Summary

Various Authors

Download file: VIConfRO_p03.pdf




- Adult Prader-Willi Snydrome Patients Therapeutic Cycles

Presentation Summary

G. Andrighetto, P. Parmigiani, U.Hladnik

Download file: VIConfRO_p01.pdf




- Growth Hormone Effects in Infants and Toddlers with Prader-Willi Syndrome: Does Early Intervention Make a Difference?

Presentation Summary

Various Authors

Download file: VIConfRO_22.pdf




- An Ethnography of Presidential Services for Adults with Prader-Willi Snydrome: The Role of the Behavioural Phenotype in Staff Members ‘Interpretations of Residents’ Behaviours

Presentation Summary

Rebecca Hawkins, Tony Holland, Marcus Redley

Download file: VIConfRO_21.pdf




- Prader-Willi Syndrome and Others with Early-Onset Morbid Obesity Share Similar Strengths in Cognition and Achievement

Presentation Summary

Various Authors

Download file: VIConfRO_20.pdf




- The Role of Family Psychiatry History in the Development of Psychopathology in People with PWS

Presentation Summary

Various Authors

Download file: VIConfRO_19.pdf




- Affective Psychosis in People with Prader-Willi Sydrome

Presentation Summary

Various Authors

Download file: VIConfRO_18.pdf




- Behavioural Analysis of a Mouse Model of PWS

Presentation Summary

Various Authors

Download file: VIConfRO_17.pdf




- What Can We Learn from Mouse Models to Better Understand PWS?

Presentation Summary

Various Author

Download file: VIConfRO_16.pdf




- Neuroendocrine Mechanisms in PWS Phenotypes

Presentation Summary

Anthony P. Goldstone, MA MRCP PhD

Download file: VIConfRO_15.pdf




- Phenomenology and Management of Mood Activation in Prader-Willi Snydrome

Presentation Summary

Janice L. Foster, MD, Linda M. Gourash, MD

Download file: VIConfRO_14.pdf




- Body Composition and GH Response to GHRH+Arginine in Adult Patients with Prader-Willi Snydrome

Presentation Summary

Various Authors

Download file: VIConfRO_13.pdf




- Testosterone Replacement Therapy in 13 Adult Patients with Prader-Willi Snyndrome

Presentation Summary

Various Authors

Download file: VIConfRO_12.pdf




- Phenotyping of Adult Mice with a Deletion of the Prader-Willi Syndrome Imprinting Center

Presentation Summary

Various Authors

Download file: VIConfRO_11.pdf




- A Master Regulator of Coordinate Gene Expression in Prader – Willi Snydrome

Presentation Summary

Various Authors

Download file: VIConfRO_10.pdf




- Small Nucleolar RNAs and Their Potency Role in PWS

Presentation Summary

Alexander Huttenhofer, MD, PhD

Download file: VIConfRO_09.pdf




- Candidate Genes for Prader-Willi Syndrome

Presentation Summary

Bernhard Horsthemke PhD, Karin Buiting PhD

Download file: VIConfRO_08.pdf




- Working Memory in Adults with Prader-Willi Snydrome. Baseline Data from a Prospective, Randomized Study

Presentation Summary

Various Authors

Download file: VIConfRO_07.pdf




- The Relationship Between Temper Outbursts, Repetitive Behaviour and a Preference for Predictability in Children with Prader-Willi Sydrome

Presentation Summary

Kate A. Woodcock, Chris Oliver and Glyn W. Humphreys

Download file: VIConfRO_06.pdf




- – Correlates of Behavioral Problems and Strengths in Persons with Prader-Willi Syndrome

Presentation Summary

Elisabeth M. Dykens, PhD

Download file: VIConfRO_05.pdf




- Intake by Young Children with Prader-Willi Snydrome

Presentation Summary

Marianne Lindmark and Krestin U. Trygg

Download file: VIConfRO_04.pdf




- Fertility and Infertility in Prader-Willi Syndrome/Testicular Histology in Nine Males with Cryptorchidism

Presentation Summary

Various Authors

Download file: VIConfRO_03.pdf




- Mortality in Prader-Willi Syndrome: Role of Genotype, Gender and GH Therapy

Presentation Summary

Various Authors

Download file: VIConfRO_02.pdf




- Update of Clinical Correlations of Genotypes in PWS

Presentation Summary

Daniel J. Driscoll, MD, PhD

Download file: VIConfRO_01.pdf




- Services in Israel for People with Prader-Willi Syndrome

Informatii de la conferinte

Larry Genstil, Ph.D.

Download file: Genstil-IPWSO Conference Presentation.ppt




- “Bolile Rare - de la evaluarea nevoilor la stabilirea prioritatilor”, Zalau, 2-3 noiembrie 2007

Invitatie sponsori/ expozanti

Download file: invitatie sponsori 2-3 noiembrie.doc




- “Bolile Rare - de la evaluarea nevoilor la stabilirea prioritatilor” Zalau, 2-3 noiembrie 2007

Asociatia Prader Willi din Romania speră ca această manifestare va oferi un climat ştiinţific şi educaţional de exceptie, dar si un cadru propice pentru întâlnirea specialiştilor din domeniu, părintilor si pacientilor in vederea dezbaterii PLANULUI NATIONAL DE BOLI RARE, asa cum a fost el gandit si elaborat de catre comitetele de lucru si cele de experti in cadrul proiectului ALIANTA NATIONALA PENTRU BOLI RARE ROMANIA – ANBRaRo finantat de CEE Trust.

Download file: invitatie participanti.doc




- Conference Report



Download file: Concentrate on the Positive Aspects of PWS.pdf







- Abstract book



Download file: abstract_final.pdf







- INVITATION

Coming to Romania, you will discover yourself, discovering others...

Download file: Invitation IPWSO Romania Conference 2007.2.2.05.doc







- Conference poster



Download file: poster final.ppt




- 6th International Prader Willi Conference - First Announcement

Concentrate on the POsitive Aspects of Prader Wlli - 21-24 June 2007

Download file: first_cj.pdf




- 1st Announcement Sixth International Prader Willi Syndrome Scientific Meeting

The Sixth International Prader Willi Syndrome Scientific Conference will be held on the above dates in Cluj, Romania under the auspices of the Romanian Prader Willi Association, International Prader Willi Syndrome Organisation (IPWSO and in collaboration with Iuliu Hatieganu University.

Download file: tony_announcement (modified).doc



 
 
 

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
-------------------------------
Servicii Sociale Acreditate
-------------------------------
AGORA - Asociatii de pacienti
-------------------------------
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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