Psychosocial needs play an important role in rare diseases. There are common burdensome and stressful events that many patients with a rare condition encounter, which are different from patients with a more common disease. Unfortunately, due to the large amount of knowledge gaps in rare disorders, there is often little room to put psychosocial topics or quality of life on research agendas. Much of the research funding goes to etiology, genetics, and treatment and care. However, many of the rare disease patients will not be able to benefit from these research outcomes in this lifetime. Currently, there is an urgent call from international and national patient organizations to reduce psychosocial vulnerability in rare diseases. Now that it has become increasingly clear that there are substantial psychological care needs in rare diseases, insights for adequate support are lacking. The current workshop focuses on uniting European expertise on psychological support in rare diseases and to develop future research goals to support as many rare disease patients and families as possible.
Aim
The aim of this workshop is to raise awareness for the psychosocial impact of having a rare disease and form a group of researchers in the mental well-being and social sciences domain for rare diseases.
Together with you and other different stakeholders we will discuss future perspectives of rare diseases and how to be ‘RareTogether’!
All research levels are welcome.
The workshop consists of interactive lectures and discussions about what it means to live with a rare disease and what interventions can be developed to support these needs. Different experts will discuss their research on different topics about quality of life and rare disease, for example about health care coordination, psychosocial needs in different disease categories, interventions and more. Questions are encouraged any time to enhance the communication and level of understanding. Interactive sessions will be held to discuss all insights from the participants. A creative activity will be held to stimulate the ‘Rare together spirit’, and the workshop will close with a platform meeting to formulate future directions for psychology in rare disease research.
To register please fill the application form until February 15th, 2023.
The training workshop is free of charge.
Affiliated to an ERN-Full Member or Affiliated Partner institution.
The organizer together with one member of the WP17 Scientific Evaluation Committee will select the most appropriate workshop participants based on their expertise and involvement on this topic.
All registered participants will be informed if they are selected to attend this training course before March 1st, 2022.
At the end of the training workshop a Certificate of Attendance will be sent to the participants who attended the entire workshop.
No credits of Continuing Education in Medicine will be issued.
Workshops will run in English.
The two-day workshop will be held in the Van der Valk hotel Nijmegen-Lent, the Netherlands.
If you have specific questions, please write to the workshop organizer:
Rosanne Smits
Rosanne.Smits@radboudumc.nl
Questions related to organization of travelling hotel, dinner should be addressed to:
Rosanne Smits
Rosanne.Smits@radboudumc.nl
For general inquiries about the workshops in the ERN RD Support and Training Program please write to:
Sanja.hermanns@ejprd-project.eu
c.n.van_beuzekom@lumc.nl