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Wojewódzki Specjalistyczny Szpital Dziecięcy im. św. Ludwika w Krakowie

Konferencja - Preceptorship Training on Hunter syndrome (Mucopolysaccharidosis type II)

W dniach 27 - 29 kwietnia w Wojewódzkim Specjalistycznym Szpitalu Dziecięcym im. św. Ludwika odbyła się konferencja dotycząca Chorób Rzadkich - Preceptorship Training on Hunter syndrome (Mucopolysaccharidosis type II).Uczestnikami szkolenia byli lekarze z różnych krajów. Zapraszamy do obejrzenia fotogalerii.

Fotorelacja z konferencji: Preceptorship Training on Hunter syndrome (Mucopolysaccharidosis type II)


Program - Preceptorship Training on Hunter syndrome (Mucopolysaccharidosis type II)

Day 1st

09:00 – 09:20

Welcome and opening remarks

Prof. Anna Tylki-Szymanska Warsaw

09:20-10:00

Lysosomal Storage Disorders –mechanism of pathology and clinical manifestations

Prof. Anna Tylki-Szymanska

10:00 -10:30

Prevalence rate of Hunter Syndrome and others MPSs.

AssProf Agnieszka Ługowska Warsaw

10:30– 11:00

Networking and refreshmentbreak

 

11:00– 11:30

Inheritanceof Hunter Syndrome

Genetic overview in X-linked diseases – a pedigree analysis in Hunter syndrome

Ass Prof Aleksandra Jezela-Stanek

Warsaw

11:30 – 12:00

Laboratory diagnosis of Hunter syndrome

Ass Prof Agnieszka Ługowska

12:00 – 12:30

Enzyme Replacement Therapy in LSDs - over20years’ experience.

Prof. Anna Tylki-Szymanska

12:30 – 13:30

Lunch

 

13:30 -14:15

Clinical trials on Elaprase® in Hunter Syndrome

Dr. Michal Konstacky ShireZug, Switzerland

14:15 – 14:45

Risk and benefits of HSCT in MPS

Prof. Anna Tylki-Szymanska

14:45 – 15:15

Networking and refreshment break 

 

15:15 – 16:30

Multidisciplinary approach to the management and care of Hunter syndrome patients

 

Polish therapeutic programs for orphan drugs.

 

Discussion: “How centre of excellence should be organised to cover patients’ needs – Polish experience and opinions of participants”

Prof. Anna Tylki-Szymanska

 

- Dr Zbigniew Zuber

Krakow

16:30 – 17:00

Hunter syndrome treatment and functionality  maintenance: supportive methods and multidisciplinary team role 

Prof. Anna Tylki-Szymanska

17:00 – 17:15

Closing remarks Day 1

Prof. Anna Tylki-Szymanska

19:00 – 22:00

Networking dinner

 

Day 2nd

09:00 – 11:00

Krakow’s Centre experience. Cases presentation.

 

Moderator  - Dr Zbigniew Zuber&DrDorota Turowska-Heydel

Krakow

11:00 – 11:30

Networking and refreshment coffee break

 

11:30 -12:30

Practical aspects of a joint USG investigation for monitoring Hunter Syndrome patients. Experience from the Krakow Centre. Cases presentation

Dr Zbigniew Zuber &Dr Katarzyna Rusnak

Krakow

12:50 – 13:30

Lunch

 

13:30 – 15:45

Cases presentation Polish and guests cases

Discussion

 

Moderator Prof. Anna Tylki-Szymanska

15:45-16:00

Networking and refreshment coffee break

 

16:00-16:20

The nurses’ contribution to medical care over Hunter patients.

Nurse Marta Romanska

nurse Beata Szykuła

Krakow

16:20-16:40

Closing remarks for Day 2

Prof.A nna Tylki-Szymanska

19:00 – 22:00

Networking dinner

 

 

Day 3rd

09:00-10:15

Discontinuation of ERT in MPS II patients - Polish experience 

Prof.A nna Tylki-Szymanska

10:15 – 10:30

Coffee break

 

1030 - 1130

Patient Organisations role on supporting patients and their families – Polish 25 years of experience in national and international activities.

Mrs. Teresa Matulka

Mrs. Justyna Matulka

Society of Polish Patients suffering from MPSs and Rare Diseases

Głosków, Poland

11:30 – 12:00

Take home message and farewell

Prof. Anna Tylki-Szymanska

12:00 – 13:00

Lunch and transfer to the Airport

 

 

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