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Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

2020-11-01
Sickle Cell Disease patients and parents’ patients Educational Session at ASCAT 2020, a joint project of ERN-EuroBloodNet, ASCAT and BSH

The SCD Patient Educational Session at ASCAT has provided for the second year the perfect opportunity for patients to experience how important is to participating in Research’s Agenda, while demonstrated the that the medical profession is willing to change and listen to the patient voice.

Considering the success of the SCD patients' session at ASCAT 2019 another educational event addressed to SCD patients in the framework of the 15th Annual Sickle Cell and Thalassaemia Conference (ASCAT) has been organised. This year the ASCAT Conference has been coordinated in collaboration with the European Heamatology Association (EHA) and the British Society of Haematology (BSH), and held from the 26th to 31st of October, on an online virtual platform as a results of Covid19 Pandemic Outbreak. 

Patients participating to the Educational Online session could also assist to the whole 15th ASCAT Conference. An important opportunity for them to learn more and discuss the latest advances in terms of diagnosis, treatment and emerging new therapies in the field of the haemoglobinopathies.

49 people living with SCD have registered to the online educational session. Among them, 38 were from European countries. Considering the Legacy from 2019 ASCAT, ERN-EuroBloodNet/ASCAT SCD Educational program is building on strong foundations.

According to the ASCAT 2020 program (PFD Downloadable), each session of the program were moderated by one healthcare professional and one person living with SCD. Educational' topics had been identified by participants as being important for research at the 2019 ASCAT. In addition, topics had been prioritized by people affected as requiring more information from a EuroBloodNet Survey. The program was held online. All participants had opportunities to ask questions in chat and/or live.

In detail, those are the sessions included in the ASCAT 2020 SCD Patients Educational Program. It consisted of a mixture of live and pre-recorded presentations.

  • Living with SCD and coping with COVID19 Pandemic Outbreak, (access to hospitals, management of crisis, receiving information about Covid-19).
  • The participations of SCD patients to Research and Peer Reviewing.
  • Three panels. One "meet the experts" and two "meet the patients' session". Patients have addressed dedicated questions to physicians and physicians and young patients have addressed questions to adult patients.
  • Living with SCD as pediatric or young adult patients.

Also this year the session has reached great outcomes. A solid patient representation, at the plenary session, presenting the outcomes of the educational program, has showed once again the importance of strengthen the collaboration among SCD community (physicians, patients, parents patients, caregivers, and all the health actors). Niches to be tackle by educational programs have been identified (new treatments, pregnancy and Bone Marrow transplant, among others) together with the need of establishing a project dedicated to mental health.  The Educational Online Session have been fully recorded. Subtitles in different languages will be edited to the video. Those videos will be available on the YouTube Educational channel, EuroBloodNet’s Edu: https://www.youtube.com/channel/UC7011seQKL7STmLpWPmUFig

Finally considering the questions received by patients and parents patients on Covid-19 a specific webinar will address this topic the 14th of December.