The 18th edition of Parent Project’s International Conference on Duchenne and Becker Muscular Dystrophy will take place online from the 17th to the 21st of February, 2021.
Last year’s edition had to be cancelled due to the Covid-19 outbreak; this year the event will be back, although based on a web platform, to provide up-to-date scientific information and much more for the entire Duchenne and Becker community.
The 2021 conference claim will be “Alone we imagine the future, together we grow” with the subtitle “Many paths of research towards one direction”, to underline the fundamental dynamics of convergence and interrelation between the many actors who make up the Duchenne community: patients, family members, researchers, clinicians, companies, volunteers.
The structure of the event was reworked in order to allow a wide participation, while giving space to an even richer and more varied programme.
The most recent updates on research and clinical studies will be dealt with in scientific sessions that will also embrace the various aspects of the clinical management of the disease. These will alternate with parallel sessions on issues related to daily life (from patients’ rights to affectivity and sexuality, to the role of siblings and more) and sessions dedicated to psychosocial aspects, with direct testimonies from the community of patients and families. In addition, some moments dedicated to socializing will be included in the programme.
A translation service (in English) will be available for all the sessions.
On Wednesday the 17th, Thursday the 18th and Friday the 19th, the program will start in the late afternoon, at 5 p.m.; it will extend throughout the day on Saturday the 20th and Sunday the 21st of February. The conference will open on Wednesday the 17th, with the first parallel sessions. Afterwards, the first scientific session will involve the scientists of the research projects supported by Parent Project and concluded during the last year.
On Thursday the 18th, the activities will open with the second scientific session, which will address one of the most anticipated topics by families, that of advanced therapies, which will be followed by a second group of parallel sessions.
On Friday the 19th the session “Absence of dystrophin: from the diagnosis of DMD/BMD to gene therapy” will kick off the third day of the conference, which will continue with a session dedicated to the psychological aspects in communicating the diagnosis.
On Friday, a space will also be dedicated to the presentation of the new video animation “What are clinical trials?”, conceived by Parent Project and created by illustrator Laura Di Francesco, with the technical support of the Cattive Produzioni agency. The animation aims to offer families a first introduction to the complex world of clinical trials, told through the eyes of a young patient and his parents. These protagonists will be confronted with the basic elements of the functioning of a clinical study but also, and above all, with the psychological, social and practical aspects of this experience, which have an impact on the daily life of those who participate.
The video will later be made available on the association’s YouTube channel, with English subtitles.
The morning of Saturday the 20th will give space to a session dedicated to the importance of genetics in the development of mutation-specific therapies, while in the afternoon we will talk about the present and future of clinical and pharmacological management. To conclude the day, a session on the psychological aspects that characterise the delicate transition from childhood to adolescence.
On Sunday the 21st the activities will open with the last group of parallel sessions, which will be followed by a session dedicated to Becker muscular dystrophy (BMD). This session, in addition to providing an overview of clinical trials dedicated to BMD, will also see the presentation of a new and important information material created thanks to the contribution of many specialists engaged for years in patient care: the Guidelines for patients and families on the clinical management of Becker muscular dystrophy.
On Sunday afternoon, two sessions dedicated to older patients will conclude the conference: the former will deal with the psychological aspects of adult life and the latter, of scientific nature, with cardiorespiratory aspects and clinical studies in this area.
It is possible to register for the Conference through this link: http://conferenza-iscrizione.parentproject.it/
The Conference will be streamed live in Italian and English on Parent Project’s social media pages (more detailed information will be provided soon).
You can find the agenda and other information on our dedicated website (http://conferenza.parentproject.it/?lang=en); you can also download the draft agenda here:
For further information:
National Headquarters: ph.+39 06/66182811 – associazione@parentproject.it
Counseling Centre: ph.+39 345/5597204 – centroascolto@parentproject.it
Scientific Area: ph.+39 342/3289199 – scienza@parentproject.it
Press Office: ph.+39 331/6173371 – e.poletti@parentproject.it