Note: These consensus statement and introduction are provided from this global site for the purpose of serving those who reside outside of Japan.
Kyowa Kirin is proud to announce the publication of “Time to Act: A Global Patient-Focused Consensus for Improving the Care of Cutaneous T-Cell Lymphoma (CTCL).”
Calling on healthcare authorities, hospitals, and clinicians to undertake 12 specific actions to help enhance awareness, testing, diagnosis, care, and support for people impacted by CTCL, the consensus statement itself is the inaugural output of the CTCL Global Care Collaborative, a newly established group involving Kyowa Kirin and 10 patient advocacy groups from across the world.
United by a shared mission to reduce the time it takes patients to receive an accurate diagnosis, and improve the quality of care and support for people living with CTCL, the Collaborative is focused on driving long-term change in four priority areas:
- Improving awareness of CTCL amongst HCPs
- Improving time to diagnosis and awareness of disease staging
- Ensuring all patients have access to appropriate care
- Empowering patients with the information they need to make informed decisions
The insights informing the group’s work reflect global perspectives, the unique needs of the patient community, and international nuances.
CTCL can have debilitating physical, emotional, and social impacts. These are difficult enough to contend with, but their burden may be compounded by issues in testing, diagnosis, and care. Notably, in its best studied subtype of mycosis fungoides (MF), the average time to diagnosis is 3-4 years.
Like many rare diseases, issues in diagnosis come from limited awareness and symptoms being mistaken for more common conditions. Once diagnosed, further health system issues, such as inaccurate disease staging and inequitable access to care, represent further barriers for some patients.
The Collaborative is dedicated to addressing these unmet needs globally – and Kyowa Kirin is proud to stand with the global CTCL community in encouraging action. As an organisation, our Commitment to Life drives everything we do, and our role as one of the founding partners of the Collaborative is a testament to our values. Together, working with the CTCL community, we are working to shape a better future for those impacted by this debilitating disease.
Please take a few minutes to read through the full consensus statement at:
https://www.kyowakirin.com/stories/20240513/pdf/e20240513.pdf
https://www.kyowakirin.com/stories/20240513/pdf/c20240513.pdf(Chinese)
https://www.kyowakirin.com/stories/20240513/pdf/k20240513.pdf(Korean)
https://www.kyowakirin.com/stories/20240513/pdf/g20240513.pdf(German)
https://www.kyowakirin.com/stories/20240513/pdf/d20240513.pdf(Dutch)
https://www.kyowakirin.com/stories/20240513/pdf/s20240513.pdf(Spanish)
https://www.kyowakirin.com/stories/20240513/pdf/p20240513.pdf(Portuguese)
https://www.kyowakirin.com/stories/20240513/pdf/i20240513.pdf(Italian)
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