Lauren Roberts | Head of Development
Rareminds
Lauren has an MA in Anthropology and Development Studies from the London School of Economics and has worked in the disability sector for over 20 years. She has worked with the rare disease community in the UK and Europe since 2011 and joined the Rareminds team in 2022. Her previous experience includes setting up the SWAN UK support network for families affected by undiagnosed genetic conditions, and acting as the Director of Support and Joint Interim Chief Executive at Genetic Alliance UK. She has sat on various steering groups and advisory panels, including the NICE committee to integrate services for children and young people affected by severe and complex conditions and helped arrange the 2018 European Conference on Rare Diseases (ECRD). Lauren is passionate about everyone impacted by a rare condition having an active and informed voice in decisions that affect them, and is committed to ensuring that they receive the support they need to manage the various challenges associated with their condition.
Appearances:
Day 3 - Friday 25th October @ 10:40
Impact of rare disease on mental health and wellbeing - building understanding of the link and impact of rare and complex diseases on mental health and improving outcomes
People living with a rare condition are either crisis managing or are alone and when they are alone, the psychological impact of the rare disease journey hits not just the affected individual but the whole family. It is not surprising that as a community, we have focused on searching for an expert who can give a diagnosis, searching for a treatment and pushing research to find a cure. For too long the unmet mental health needs of the rare disease community has remained unseen and neglected, frequently overshadowed by the other medical complexities. The young citizens, under the Rare 2023 foresight study have called for us to now look beyond the physiological symptoms and take action to address the psychological impact that is associated with rare conditions.
The impact of rare conditions on mental health is now starting to get recognized, as studies have shown that >90% of PLWRD surveyed felt worried, anxious, stressed and/or depressed and 19% had suicidal thoughts (Spencer-Tansley 2022). Despite this significant impact, 85% of PLWRD are not offered or received sufficient psychological support in an Expert Centre (Courbier et al. 2017; Nunn et al. 2017). Also, whilst progress is being made with the developments of new therapies and treatments, 95% of rare conditions till do not have an active treatment which results in living with chronic uncertainty and anxiety.
Session Overview:
The aim of the session is to identify what support groups representing those living with rare conditions, clinicians and industry partners do to reduce the impact of rare conditions on mental health and wellbeing.
The session will specifically:
· Share the growing body of evidence that quantifies the impact of living with a rare condition.
· Sharing tools and approaches that have worked for the support groups to help their communities through the undiagnostic odyssey, through to accessing the care and support.
· Sets out what clinical services can do to integrate psychosocial care for PLWRD.
· Explore how industry partners have providing support to the rare disease communities.
· Explore the challenges and opportunities in performing research on the impact of rare conditions on mental health; and on QoL tools, PROMs and PREMs used in performing trials.
The session will be interactive with the participants contributing through surveys using Mentimeter.
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