It is not my fault! - Webinar on the impact of the Diagnostic Odyssey on Mental Health

It is not my fault! – Webinar on the impact of the Diagnostic Odyssey on Mental Health

March 2024

21st March 2024 – From 11.00 am to 12.30 pm CET (Paris time)

Rare conditions are often diagnosed late and after many delays: on average they are diagnosed as late as 5 years, and following visits to more than 6 specialists. One of the reasons for the delay is the difficulty in recognising the symptoms of an underlying rare condition, as the symptoms are often similar to other more common conditions.

As a result, people with an undiagnosed condition are often not being taken seriously and are discharged without further clinical workup or diagnostic tests. The undiagnosed community may experience being labelled as hypochondriacs, having a psychosomatic disorder or even worse, being accused of causing harm to their child, resulting in significant stress, social isolation, and feelings of worry, anxiety and depression.

People with an ‘undiagnosed’ or ‘yet to be diagnosed’ condition live with the prolonged impact of the diagnostic odyssey, which causes emotional stress, economic loss and significant delay in appropriate treatment. All people experience the psychological impact and stresses linked to the diagnostic odyssey and for some, this odyssey never ends, with them never securing a diagnosis, for example, for those living with undiagnosed conditions or with syndromes without a name.

Whilst significant progress is being made in identifying the cause of (new) rare conditions, due to advancements in diagnostic tests and analysis, the psychosocial support for people navigating the diagnostic odyssey has, until now, been under-recognised and neglected.

The 3rd Open Webinar on the impact of the Diagnosis Odyssey on Mental Health will highlight the challenges and impacts people face whilst searching for a diagnosis as well as exploring the different approaches and tools that can support strengthening the protection factors and reduce the inherent risks that are the hallmarks of the rare disease journey.

WEBINAR AGENDA

Time	Topic	Speaker
11.00 –11.05	Welcome and opening remarks	Concha Mayo, EURORDIS
11.05 –11.20	Keynote Speech: Impact of the diagnostic odyssey on the mental health and wellbeing.	Helene Cederroth, Wilhelm Foundation
11.20 –11.40	Advocacy in action, securing support for people travelling the diagnostic odyssey	Gulcin Gumus, EURORDIS
11.40 –12.00	Panel discussion: Identifying the protection factors and tools that can reduce the mental health impact of living through the diagnostic odyssey.	Chair: Matt Bolz-Johnson – Gulcin Gumus, EURORDIS – Helene Cederroth, Wilhelm Foundation – Charlotte Gaasterland, ERN-ITHACA – Gareth Baynam, Rare Care Centre
12.00 –12.20	Questions & Answers	All
12.20 –12.30	Final & Closing Remarks	All Panellists & Matt Bolz-Johnson, EURORDIS

The outcome of the webinar will be a factsheet to help increase awareness about common mental health needs and how to address them, for the rare disease community.