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 |
|
