Asociatia Prader Willi din Romania


	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