Systemic Sclerosis Patients’ Stories: tell us your experience

Posted September 4, 2019

Among other initiatives, the ERN ReCONNET is mapping the existing patient’s pathways followed for every rare connective tissue diseases (rCTDs) covered by ERN ReCONNET in all the Healthcare Providers of the Network.

The aim of this work is to identify the current practice across the different ERN ReCONNET centres and identify eventual challenges and best practices already in use across the Network. This will enable the creation of an ideal ERN ReCONNET approved patient’s pathway to be recommended across Europe. The process will be initially focused on Systemic Sclerosis and it will then be followed for all rare and complex connective tissue diseases (rCTDs).

The main added value will of course be represented by the input of patients, that will be able to provide their expertise both on the disease and on the care they experience in their country.

In particular, we would like to collect the experience of European scleroderma patients regarding their disease. This will allow to integrate the views of patients with the views of the clinicians, in order to:

highlight the importance of how the patient perceives the disease;
understand the level of awareness and the experiences lived by scleroderma patients of their care pathway (from the first symptoms until today);
create an ideal European pathway for Scleroderma patients that takes into consideration both the needs of patients and the needs of clinicians, with the aim of harmonising the care in Europe.

In order to collect the experiences and perspectives, we would like to gather the stories of European scleroderma patients in an on-line (anonym) Platform.

Our idea would be to give the possibility to the largest number of patients and to avoid the language barrier as much as possible. Therefore, thanks to the collaboration of different Scleroderma patients, the questions were co-designed and translated into 8 different languages (English, French, German, Italian, Spanish, Dutch, Portuguese and Romanian).

In this way, patients will be able to express their point of view and perceptions on their experience with the disease and to tell their stories regarding their care and their pathway. The stories will be then collected and disseminated to raise awareness and to empower patients and clinician in the management of these diseases across different countries.

We would be very grateful if you could support us in this activity and disseminate the link among your members via mail or via Social Media in order to give the possibility to many patients to tell their stories.

The links to be shared are the following:

Thank you in advance for your contribution!

reconnet