Ob pobudi Evropskega združenja za redke bolezni, ki je 28. februar proglasilo za Dan redkih bolezni, vas vabimo na praznovanje tega dne in

TISKOVNO   KONFERENCO,

ki bo v četrtek 25. februarja 2010 ob 11. uri v predavalnici Pediatrične klinike na Bohoričevi 20 v Ljubljani.

Na konferenci se bomo tokrat osredotočili na cistično fibrozo, fabryjevo bolezen in pompejevo bolezen. Tiskovno konferenco bo odprl državni svetnik Boris Šuštaršič, ki bo, tudi kot predsednik reprezentativne invalidske organizacije Društva distrofikov Slovenije, spregovoril o pomenu interesnega združevanja obolelih. Na tiskovni konferenci bodo sodelovali strokovnjaki za področje teh bolezni, to so  mag. Andreja Borinc Bedenc, dr.med., doc. dr. Barbara Salobir, prim. asist. Bojan Vujkovac, asist. mag. Lea Leonardis, dr. med. in gospa Slavka Grmek Ugovšek.

Tiskovno konferenco bo vodil Borut Pogačnik (ZIFS).

Po vrsti že tretje praznovanje Dneva redkih bolezni je namenjeno zavedanju tako zdravstva  kot širše javnosti, da je potrebno organizirano skrbeti tudi za ljudi, ki jih zadevajo redke bolezni in jim nuditi ustrezno zdravstveno zaščito. Moto letošnjega Dneva redkih bolezni je posvečen sodelovanju med obolelimi in raziskovalci za boljšo kvaliteto življenja.

Lepo pozdravljamo,
Andreja Šuštar

Program

• Boris Šuštaršič – uvodni pozdrav in o pomenu interesnega združevanja obolelih
• Asist. mag. Lea Leonardis o Pompejevi bolezni (o obolenju, posledicah, načini zdravljenja in težave povezan s tem, število obolelih)
• Bolnik s Pompeovo boleznijo (s kakšnimi težavami se srečuje)
• Prim. asist. Bojan Vujkovac o Fabryjevi bolezni (o obolenju, posledice, načini zdravljenja, število obolelih, težave obolelih)
• Mag. Andreja Borinc Beden o cistični fibrozi pri otrocih (o obolenju, posledice, načini zdravljenja, število obolelih)
• Doc. dr. Barbara Salobir o cistični fibrozi v odrasli dobi (pojavnost, posledice, načini zdravljenja, število obolelih)
• Gospa Slavka Grmek Ugovšek o društvu za cistično fibrozo, kaj nudi obolelim, s kakšnimi težavami se srečujejo oboleli

Lep pozdrav
Prof. dr. David Neubauer, dr. med.

kongresi, obvestilo

Študentje pravne in medicinske fakultete so tudi letos, kot že nekaj let zapovrstjo, zbirali prostovoljne prispevke za Ustanovo za otroško nevrologijo. Letos so zbrali 3450€, ki jih bomo porabili za ureditev prostorov za nevrološko ambulanto.

Za njihov altruizem in zagnanost se jim najlepše zahvaljujemo.

donacije, obvestilo

Spoštovani,

namesto v državni proračun lahko 0.5% dohodnine, ki jo od vas v vsakem primeru vzame država, namenite Ustanovi za otroško nevrologijo, ki pomaga otrokom z nevrološkimi zdravstvenimi težavami. Če se v lanskem letu ali do sedaj še niste odločili za namenitev dela dohodnine, lahko to storite kadarkoli.

Vaša odločitev za vas ne predstavlja nikakršne dodatne finančne oziroma davčne obremenitve.

obvestilo, otroška nevrologija

V dogovoru s strokovnim direktorjem, prof. dr. Rajkom Kendo, dr. med. in poslovno direktorico PeK, ga. Diano Cesar Plaz, univ.dipl. prav., obveščamo, da prostori na ulici Stare pravde 4 in 2 ostajajo v uporabi KO za otroško, mladostniško in razvojno nevrologijo.

O dogovoru je obveščena »varnostna služba«, ki bo zagotavljala varovanje stavbe vsak delovni dan, od 08.00 – 17.00 ure.

Prof. dr. DAVID NEUBAUER, dr. med.

PREDSTOJNIK KLINIČNEGA ODDELKA ZA OTROŠKO, MLADOSTNIŠKO IN RAZVOJNO NEVROLOGIJO

obvestilo

IPOKRATES: Follow-up of Premature Infants

Date: November 24 – 26, 2009; starts at 09:00 a.m.
Place: Athens, Greece

» Program v PDF obliki

Objectives

This seminar will deal with basic mechanisms of brain injury and brain plasticity after such injury in preterm and term neonates. The early consequences will be presented in detail, especially regarding the neonatal convulsions and risk to develop future postneonatal epilepsy. The long term outcome will be presented with special concern on quality of life in survivors of neonatal intensive care and function in adulthood. Different ethical issues will also be presented, especially regarding withholding and withdrawing treatment as well as the question how far we still can go with preterm labour.

Lecturers

Mizrahi E, Baylor College of Medicine, Houston, Texas, USA
Kostović I, Croatian Institute of Brain Research, University of Zagreb, Medical School, Croatia
Casteloe K, Neonatal Unit, Homerton University Hospital, Homerton, UK
Saigal S, Neonatal Follow-UpProgramme, McMaster University, Hamilton, Ontario, Canada
Haataja L, University of Turku, Finland

Program

TUESDAY, NOVEMBER24, 2009
09:00 What is perinatal brain damage? Kostovic I
10:00 The EPIcure study: outcomes for children born at threshold of viability Casteloe K
11:00 Break
11:30 EEG, CFM and EEG-video monitoring in at-risk neonates     Mizrahi E
13:00 Lunch Time
14:30 Brain vulnerability I: leukomalacia that can damage cortical pathways    Kostovic I
15:30 How to reduce the frequency of preterm labour and increase the quality of survivors Casteloe K
16:30 Break
17:30 Outcomes of IVF pregnancies: impact on health care systems and family Saigal S
18:30   Discussion day 1
19:00 Dinner

WEDNESDAY, NOVEMBER25, 2009
09:00 Brain vulnerability II: lesions on the fronto-limbic system Kostovic I
10:00 Neonatal seizures: etiology, treatment and prognosis Mizrahi  E
11:00 Break
11:30 Withdrawal / withholding of life sustaining and limitation of treatment in Casteloe K
intensive tertiary care units
13:00 Lunch Time
14:30 Can neurological scores predict outcome? Haataja L
15:30 Promoting early brain development in high-risk infants Saigal S
16:30 Break
17:00 Neonatal seizures: characterization, classification and clinical recognition Mizrahi E
18:00 Discussion day 2

THURSDAY, NOVEMBER26, 2009
09:00 Outcomes for the VLBW infants; anything new? Haataja L
10:00 Adult functioning of very preterm infants Saigal S
11:00 Break
11:30 Quality of life in survivors of neonatal intensive care Saigal S
12:30  Final discussion
13:00  End

kongresi, obvestilo, otroška nevrologija, raziskovanje Atene, IPOKRATES

14th Mediterranean Meeting of Child Neurology

Marsala, Sicily, May 28th – 30th 2009

PRELIMINARY PROGRAM
(UPDATED 07.04.2009)
MAY 28TH, 2009

13.00 – 14.00 Registration
14.00 Welcome address and opening remarks (Paolo Curatolo, Italy)

14.15 – 16.15 Section 1 – Epilepsy
Chairpersons: Maurizio Elia (Italy), Meral Topcu (Turkey)
➢ Epilepsy and ADHD (Orvar Eeg-Olofsson, Sweden)
➢ Epilepsy and Autism (Caterina Cerminara, Italy)
➢ Epilepsy and childhood migraine (Antigone Papavisiliou, Greece)
➢ Epilepsy in the neurometabolic disorders (Paolo Balestri, Italy)
➢ Discussion

16.30 – 18.30 Section 2 – Neurometabolic – neurogenetic disorders
Chairpersons: Vlatka Bosniak (Croatia), Sotiris Yourokos (Greece)
➢ MRS in the diagnosis of hereditary neurometabolic disorders (Meral Topcu, Turkey)
➢ Leucodistrophies (Chahnez Trikki, Tunisia)
➢ Congenital muscular dystrophies and congenital myopathies (Bernard Echenne, France)
➢ Phenotypic variability and genetic background of 6PTPS deficiency (Vincenzo Leuzzi, Italy)
➢ Discussion

18.30 – 19.15 Section3
Chairpersons: Paolo Curatolo (Italy), Shaul Harel (Israel)
➢ 18.30 – 19.15 The history of the Mediterranean Meeting of Child Neurology (Miko Velickovic, Slovenia)

19.15 Welcome reception

MAY 29TH, 2009

08.30 – 09.00 Registration

09.00 – 11.00 Section 4 – Developmental disabilities
Chairpersons: Antigone Papavisiliou (Greece), Ibrahim Shoukry (Egypt)
➢ Intrauterin growth retardation (Shaul Harel, Israel)
➢ Mental retardation (Cinzia Galasso, Italy)
➢ Frontal dysfunctions in ADHD (Lieven Lagae, Belgium)
➢ An fMRI study of frontostriatal circuits during the inhibition of eye blinking in persons with Tourette syndrome (Luigi Mazzone, Italy)
➢ Discussion

11.15 – 12.45 Section 5 – Neuropediatrics
Chairpersons: Bernard Echenne (France), Lorenzo Pavone (Italy)
➢ Multiple Sclerosis in Children (Banu Anlar, Turkey)
➢ Acute Disseminated Encephalomyelitis (Sotiris Yourokos, Greece)
➢ Movement Disorders in Neurometabolic Diseases (Neziha Khouja, Tunisia)
➢ Discussion

Lunch Time and poster session

13.30 – 15.00 Free presentations
➢ Psychogenic dystonia in children (H. Benrhouma, Tunisia)
➢ Additive effect of valproic acid and levetiracetam in pentylentetrazol-induced seizures in rats (G. Coppola, Italy)
➢ Abnormal parieto-motor connectivity in Tuberous Sclerosis Complex (R. Moavero, Italy)
➢ Deletion 2p25.2: a cryptic chromosome abnormality in a patient with autism and mental retardation detected using aCGH (A. Lo Castro, Italy)
➢ Limb-girdle muscolar dystrophy (N. Zeka, Kosovo)
➢ Neonatal outcome of children born to women with active epilepsy on mono-therapy versus poly-therapy (I. Prpic, Croatia)
➢ Cerebral arterial aneurysms in children (V. Sabolic Avramovska, Macedonia)
➢ Neuropsychological profile in a patient with bilateral periventricular nodular heterotopia (R. Siracusano, Italy)

15.30 Social program
• visit to Mozia Island
• social dinner

MAY 30TH, 2009

08.30 – 09.00 Registration

09.00 – 11.00 Section 6 – Developmental disabilities
Chairpersons: Banu Anlar (Turkey), Marcello Vitaliti (Italy)
➢ Neurogenetic syndromes with microcephaly (Giovanni Corsello, Italy)
➢ Tourette Syndrome (Renata Rizzo, Italy)
➢ Motor performances in children affected by tic disorder (Francesco Cardona, Italy)
➢ Striking improvement of Restless Leg Syndrome with Levetiracetam in ADHD children (Rosalia Silvestri, Italy)
➢ Discussion

11.15 – 13.00 Section 7 – Intractable epilepsy
Chairpersons: Orvar Eeg-Olofsson (Sweden), Chahnez Trikki (Tunisia)
➢ Intractable epilepsies (Paolo Curatolo, Italy)
➢ Myoclonic-astatic epilepsy (Ibrahim Shoukry, Egypt)
➢ Ketogenic diet in catastrophic epilepsy (GianGennaro Coppola, Italy)
➢ VNS in pharmacoresistant epilepsy (Emilio Franzoni, Italy)
➢ Discussion

Lunch time and poster session

14.00 – 15.30 Free presentations of selected posters and AITA award

15.30 Conclusions and social program

kongresi, obvestilo, otroška nevrologija Child Neurology, Mediterranean

Vljudno vas vabimo, da odgovorite na vprašalnik o sodelovanju otrok v kliničnih raziskavah. Gre za evropski projekt namenjen temu, da bi bilo sodelovanje med otroci/starši in zdravniki čim bolj plodno. Vsi starši in mladostniki nad osem let ste vljudno vabljeni k sodelovanju. Vprašalnik lahko po novem najdete tudi v slovenskem jeziku. Kliknite prosim nas spodnjo povezavo.

» RESPECT

obvestilo, raziskovanje eu, otroci, projekt, raziskovanje, starši

Spletne strani so v fazi selitve / prenove, zato se opravičujemo za vse pomanjkljivosti. Pripombe in predloge, ki so zelo dobrodošli, prosim pošljite na

intendant * pedkl.si

Hvala in lep pozdrav, D.Osredkar

obvestilo, otroška nevrologija

Sporočilo za medije:
Pediatrična klinika bogatejša za aparat za video elektroencefalografijo – videoEEG

Ljubljana, 28. januarja 2003
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obvestilo EEG, Video EEG