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World Duchenne Awareness Day
Poland 2023
Entry
We invite you to participate in the celebration of the World Duchenne Awareness Day Poland 2023 organized by the StopDuchenne Foundation Poland in cooperation with the Parent Project Muscular Dystrophy Poland Foundation, the Foundation for Helping Patients with Muscular Dystrophy. Piotr Karliński, the Polish Physiotherapy Association and the Association for Good Clinical Practice Poland – GCPpl.
Purpose of the celebration
promoting knowledge about rare diseases, in particular DMD, in the society,
promoting knowledge about clinical trials in the society,
counteracting social exclusion of patients with rare diseases, in particular DMD,
and fundraising for:
- covering the costs of implementing the project, in particular for the implementation of the conference, concert and information campaign
- designing or selecting an existing mobile application to support physiotherapists and parents during physiotherapy of patients and to search for a certified physiotherapist near the patient’s place of residence,
- other purpose indicated by the Event Committee, within the budget of the project.
Main Events
7.09.2023 – conference on Duchenne Muscular Dystrophy and clinical trials, during which 4 to 6 discussion panels will take place,
7.09.2023 – concert of Astor Piazzolia’s music performed by Dr. Musician Sebastian Wypych and his band Gang Tango:
https://www.gangtango.pl/ and Argentine tango show,
7.09.2023 – highlighting buildings and bridges with red color, symbolizing the celebrations,
from 4.09 to 6.09.2023 inclusive – lectures in primary and secondary schools about DMD and on clinical trials, i.e. how drugs are made. The lectures will be conducted by GCPpl Clinical Trials Ambassadors with the participation of parents of sick children who attend these schools,by 4.09.2023 – preparation of didactic materials to be distributed in schools where lectures will be conducted,
until September 7, 2023 inclusive – an information campaign explaining what DMD is and promoting the symbols of the disease,
up to and including September 7, 2023 – fundraising to cover the costs of the project, in particular for the implementation of the conference, concert and information campaign,
- 9.09.2023 exhibition of cars for the disabled and rehabilitation equipment.
Attention!!!
The StopDuchenne Foundation as the main organizer is responsible for the financial side of the project,
The costs of the event will be covered by donations to the StopDuchenne Foundation,
All events are carried out pro publico bono,
Members of the board of the StopDuchenne Foundation and Co-organizers also work pro publico bono, devoting their free time to the implementation of this project,
Participation in all planned events is free for their participants,
The costs of possible travel and accommodation are covered by the participants themselves.
The StopDuchenne Foundation would like to thank everyone who helps us in the implementation of this project. We would like to express our special thanks to the Kozminski University, which supports us by lending the Aula im. Leon Koźmiński in order to conduct the conference, and Mr. Sebastian Wypych, PhD, and the Gang Tango band for a charity performance. Without their support, such a large project would not have been possible.
Recipients
The event is addressed to:
- patients and their carers and patient organizations,
- primary, secondary and university students,
representatives of the medical community, including physiotherapists, doctors of various specialties, nurses, representatives of other medical professions, students of medical faculties and others interested in rare diseases, - people involved in clinical trials, in particular clinical trials on rare diseases,
- representatives of public administration,
- everyone interested in rare diseases and the problems of people suffering from them.
Scientific Council of the Event
Due to the provisions of the GDPR, we are waiting for confirmation from all members of the Scientific Council.
After receiving them, we will publish the composition of the Scientific Council
Information about the conference
Date: 7 September 2023
Time: 9.00 – 16.00
Place:
Kozminski University
Leon Kozminski’s Aula
st. Jagiellońska 57,
03-301 Warsaw
Conference agenda: under development
Lecturer: Dr Łukasz Więch
Concert information
Date: 7 September 2023
Time: 19.00 – 21.00 (to be confirmed)
Artist: GangTango Band
Repertoire: Astor Piazzolia’s Musics
Place:
Relax scene
st. Złota 8
00-019 Warsaw
Leading: in the course of arrangements
Main organizer
Fundacja
Co-organizers
Honorary patronages
Artistic partner
Content partner
Patrons of the event
Media patrons
