Project of Polish study on Angelman Syndrome

We aim for bringing the community of Angelman Syndrome friends and relatives closer together, as well as the doctors and scientists working on this disorder. Currently we carry out our own work to improve lives of those affected by Angelman Syndrome and their families in Poland.

Assignments we are working on now are:

• Creating series of free monthly online meetings involving professionals who work with individuals with Angelman Syndrome (therapists, doctors, scientists):

  • seminar 01 - Kacper Łukasiewicz, PhD - FAST 2021 Conference report - December 2021 (video)

  • seminar 02 - Agnieszka Jóźwicka – Looking for ways to fund disabled individual’s treatments - January 2022 (video)

  • seminar 03 - Aldona Mysakowska-Adamczyk – Augmentative and Alternative Communication (AAC) in everyday life of a family - March 2022

  • seminar 04 - Marek Bachański, MD - April 2022

  • seminar 05 - Prof. Robert Śmigiel, MD, PhD - May 2022 (video)

  • seminar 06 - Mateusz Kus - June 2022 (video)

  • seminar 07 - Marcin Dziemidzionek - July 2022 (video)

  • seminar 08 - Magdalena Kaźmierczak - PECS - facts and myths - October 2022 (video)

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• Discussing scientific work planned to be carried out among patients (establishing long-term assignments, introducing cost estimation) - January 2022

• Preparation for the questionnaire study to describe polish population of Angelman Syndrome patients:

  • demographic questionnaire

  • drugs questionnaire

  • communication skills questionnaire (ORCA) - applying for the license

  • epilepsy questionnaire - in progress

  • sleep questionnaire - in progress

  • behavior questionnaire

  • social behavior questionnaire

  • motor skills questionnaire

Contact us: info@dotprot.com

Patronite: https://patronite.pl/drkacperlukasiewicz