The bright side of 2020: what we have done and achieved in Share4Rare
The New Year began with the launch of a research project aimed at studying the long-term adverse effects of paediatric acute lymphoblastic leukaemia, which was added to the pilot projects opened in 2019 focused on neuromuscular diseases, undiagnosed patients and rare developmental tumours.
The following months were of a frantic virtual activity, as we were trying to adjust and adapt to confinement while continuing to offer resources and services to patients and families. In April 2020, in the midst of the pandemic crisis, we held the webinar Online Advocacy – Social Media & Valuable Tools, where we shared on how to prevent the spread of fake news and what to do to overcome fear of treatment side effects. One of the main topics covered was the importance of patient forums, a habitual issue at Share4Rare.
In the same month we organized the first Share4Rare virtual café with patient organizations. The event was focused in explaining the new functionality of the platform, which allows those associations legally constituted as such in any country of the European Union to register as users in the platform. An online seminar was also organized alongside with the family therapist Àngels Ponce, a regular collaborator of the project. In the webinar, entitled Pareting a child with a disabling disease in the days of the coronavirus, Àngels discussed various aspects focused on helping families cope with confinement in the best possible way. At the beginning of May, the Virtual café on genetic diagnosis in rare diseases took place, led by geneticists Gemma Marfany and Lluís Montoliu. Lluís Montoliu repeated shortly after having participated in another of our virtual cafés with the webinar Introduction to genetics, our programming language.
Starting the second half of the year, and given that the global situation was increasingly worrying and that many patients were being affected more sharply by the pandemic, we launched a new registry to better understand how COVID-19 affects people with rare diseases. The registry is led by the Sant Joan de Déu Foundation and the Sant Joan de Déu Barcelona Hospital in collaboration with the Garrahan Hospital, a centre of reference for rare pediatric diseases in Argentina. To disseminate the registry, the project team organized a series of webinars addressed to patients and families, as well as professionals.
In July, a new functionality was included within the Share4Rare platform: the new People Like Me (PLM). PLM allows, among other things, to report on the most relevant users and patient organizations related to your profile and to address your questions to the community of users that are potentially more interested in your questions and answers.
Autumn came and with it new features aimed at improving the user experience in Share4rare. In October the digital consent was implemented on the platform. For most potential users, the main problem when registering in Share4Rare was the requirement to manually download, sign and upload the informed consent. In many cases this blocked the registration process. With the implementation of the digital informed consent patients can complete the registration process more easily.
In parallel, and with the aim of spreading the word about the global COVID-19 patient registry, the International Congress on the Effects of COVID-19 on People with Rare Diseases was held. Among other things, the registry was presented and several topics of interest related to the pandemic were discussed. Here you can read the chronicles of the 1st, 2nd and 3rd day.
Shortly after, the registry of COVID-19 and rare diseases was opened for healthcare professionals. This survey allows clinicians to report the symptoms of patients they have visited, as well as some data on the infection, the underlying disease of these patients and the treatment they received before and during the infection.
It is true that 2020 has been a convulsed year full of uncertainty, but it has also been a year full of good ideas and a great desire to face the new challenges that have arisen. Many thanks to all the people who have joined the platform, who give us a hand in the dissemination of the projects and who have shared their experience with Share4Rare. We will continue to work hard in 2021 to improve the lives of people affected by rare diseases!
