Putting you in the heart of the rare community – Sjögren’s UK
Estimated reading time: 3 minutes
Patient advocacy groups deliver their top three unmet needs and main asks of industry to best serve their rare community. This week’s insights come from Linda Stone, trustee (former chair) of Sjögren’s UK
The mission of Sjögren’s UK is to provide education and support about Sjögren’s for patients, carers, health care professionals and the wider community; promote research into causes and treatment of Sjögren’s; and to advocate for patients with clinicians, government and health care providers.
Sjögren’s is a serious systemic disease that can impact any organ system in the body. Typically, it initially manifests with dry eyes, dry mouth, fatigue and muscle and joint pains. The dryness impacts sight, dentition, and can occur throughout the body. Fatigue can include ‘brain fog’. Systemic effects are serious effects and should not be underestimated.
What are your top three unmet needs or main asks of industry to best serve your rare ecosystem?
There is a real and urgent need for effective treatment to mitigate the devastating impact of Sjögren’s disease. Currently, there is nothing that effectively stops the symptoms, let alone any medication that will reverse the disease. All we have at the moment are products that afford some symptom relief.
Better access to well informed clinicians and ancillary healthcare professionals to ensure optimum care. At the moment, care is not consistent throughout the UK.
The charity does not receive any consistent external funding. It relies upon annual subscriptions from patients who support the charity which is insufficient to support its work. This is augmented by some fundraising by supporters and occasional bequests. Increased and consistent funding would provide the charity with a firmer foundation going forward. With the current financial climate, secure funding will enable Sjögren’s UK to achieve much more for patients.
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