ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs.
Transition of Care, also known as transition, refers to a meticulously planned and active process that begins before individuals reach 18 years of age and culminates in their transfer from pediatric to adult healthcare services. Such approach helps and supports young people who are growing up and will move from child doctors to adult doctors and at the same time, it will prepare for a smooth transfer. The goal is to empower young patients to manage their own disease and medication and take full responsibility for themselves, while also looking after their physical, emotional, and social needs during this important lifetime of change.
Transitional care from pediatric to adult healthcare, is a critical process that requires careful planning to ensure a smooth transition. ERN ReCONNET aims to enhance the quality of transitional care provided by healthcare providers (HCPs) within its network and hopefully, more widely in the EU.
Aimed to address this need, the Transition of Care Task Force within ERN ReCONNET was recently established in 2023. Guided by the leadership of Prof. Gabriele Simonini from AOU Meyer IRCCS, Florence (Italy) and Prof. Tadej Avčin from Ljubljana University Medical Centre (Slovenia), this task force boasts a diverse composition. Expert clinicians in pediatric and adult care, alongside patient representatives (ePAGs), and members of the ERN ReCONNET Coordination Team, are working on this important project.
In particular, the members are:
- ERN ReCONNET Young: Edoardo Marrani (AOU Meyer, Florence – Italy) and Mojca Zajc Avramovic (Lubiana University Medical Center – Slovenia)
- Patients representative: Eva Collado (EDS ePAG representative) e Linda Schraven (patient representative identified by the Scleroderma working party)
- Other members: Chiara Baldini (AOUP Pisa – Italy), Arjan Vissink (Groningen – Germany), Diana Marinello (ERN ReCONNET Coordination Team, AOUP Pisa – Italy), Paola Triggianese (Ospedale Tor Vergata, Rome – Italy), Sylvia Kamphuis (Rotterdam, Erasmus University Medical Center – The Netherlands), Filipa Oliveira Ramos (Centro Hospitalar Universitário Lisboa Norte, Lisbon – Portugal), João Eurico Fonseca (Centro Hospitalar Universitário Lisboa Norte, Lisbon – Portugal), Andrea Zacarias (Hospital Sant Joan de Déu Barcelona – Spain).
The primary objective of this task force is to identify the predominant unmet needs and gaps in transitional care for the young rCTDs community, laying the foundation for future actions by ERN ReCONNET.
To initiate these efforts, a survey has been launched to enhance the transitional care experience for young persons with rCTDs, aiming to meticulously map existing transitional models in practice. What distinguishes this survey is its inclusive approach, targeting not only healthcare providers within the Network but also patients and their caregivers. By gathering their perspectives, perceptions, and challenges encountered during the transition pathway, the survey ensures a comprehensive understanding of the current landscape.
Looking ahead, the task force aims to develop a core set of recommendations for transitional care to be disseminated across ERN ReCONNET centers and throughout Europe, promoting a more equitable care for all European young patients. Additionally, educational activities will be developed and employed to disseminate the generated knowledge on transitional care, foster collaboration, and empower stakeholders within the rCTDs community.
Central to the mission of this task force is the partnership among healthcare providers, patients, and caregivers. The task force by collaborating with patients, seeks to co-create solutions that address their unique needs and challenges during the transition of care. By actively involving patients and caregivers in these activities, their voices will be heard, their perspectives will be valued, and their experiences will be at the center of the decision-making processes.
We extend an invitation to you to join us on this journey towards enhancing patient empowerment and outcomes to fostering a more seamless transition of care for young persons living with rare connective tissue diseases.
The ERN ReCONNET webinar on “JUVENILE ONSET SYSTEMIC SCLEROSIS (jSSc): INSIGHTS ON AN ORPHAN DISEASE”, with Dr. Ivan Földvari and Dr. Edoardo Marrani moderated by Prof. Vanessa Smith, primary goal is to offer a comprehensive overview of jSSc, which encompasses various aspects, including distinctions between juvenile and adult-onset diseases in terms of clinical presentation, treatment approaches, and disease outcomes.
JSSc is considered an orphan disease, with an estimated prevalence of only 3 cases per 1,000,000 children. In 2007, the International Inceptions Cohort for jSSc was established, as an instrumental initiative aimed at promoting collaborative efforts for both research and patient and thus enhancing our understanding of this rare condition. Currently, the registry is actively enrolling 245 patients.
On the ERN ReCONNET YouTube Channel, a dedicated Playlist on Young Rheumatic Diseases Webinars has been created to collect all the episodes developed by our experts on this relevant topic.
Together, we can positively impact the lives of those affected by rCTDs!
Webinars on Young Rheumatic Diseases
ERN ReCONNET Awareness Day Project
On March 18th 2024, ERN ReCONNET joined for the first time the World Young Rheumatic Disease Day, where we official launched this important new Task Force focused to tackle an important aspect associated to pediatric population.
Get in touch with us for more info at this email: info@ern-reconnet.eu
