Supporting Patients
Acting as a connector and community builder, we work with our stakeholders to identify and connect with patients earlier on their journey, helping them to access the care, treatment and support they need.
Shining A Light on XLH
The Shine A Light on XLH campaign and immersive experience was created to tell the stories of 11 inspiring people living with XLH.
It is space where people living with XLH can recognise their experiences in the stories and lives of others, learn about their condition and access information and support. For more information, please visit the virtual exhibition here.
For more information on the management and treatment of XLH, visit the XLH Link platform here.
Kyowa Kirin launches the Time to Act global consensus statement in Cutaneous T-Cell Lymphoma (CTCL)
In May 2024, Kyowa Kirin proudly announced the publication of 'Time to Act: A Global Patient-Focused Consensus for Improving the Care of CTCL', which has been developed in collaboration with patient advocacy groups.
This consensus statement is the inaugural output of the CTCL Global Care Collaborative, a newly established group organised and funded by Kyowa Kirin. Its membership is comprised of patient advocacy groups from across the world and Kyowa Kirin.
The Collaborative is united by a shared mission to reduce the time to an accurate diagnosis and improve the quality of care and support for people living with CTCL. To deliver on this mission, Time to Act calls 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.
Please take a few minutes to read through the full consensus statement, available in English and German.
Supporting Multidisciplinary Care
Multidisciplinary teams (MDTs) are vital in supporting people living with rare diseases through their diagnosis and care journey. They facilitate better access and more effective delivery of specialist care. For rare diseases like XLH and CTCL, this is vital for those managing such complex diseases.
Kyowa Kirin’s goal is to identify best practices for MDTs in XLH and CTCL across Europe. This is so we can partner with the XLH and CTCL communities to support best-practice sharing, communicate what ‘good’ care looks like and better understand care delivery and the impact it can have on people’s lives.
Watch the videos below to learn more.
MDTs in XLH
MDTs in CTCL
Our Patient Interaction Policy
We are committed to ethical and meaningful interactions with patients, care partners, patient advocates and patient advocacy groups. This means ensuring all collaborations between KKI and the patient community reflect the key principles of respect, integrity, independence and transparency.
For more information about how KKI interacts with the patient community, read our Patient Interaction Policy here.
Access to Medicines
There may be occasions when it may be appropriate for a Kyowa Kirin unlicenced medicine to be provided for a patient using Access to Medicines mechanisms following a request from the responsible Healthcare Professional. This does not include providing medicines as part of a clinical study, humanitarian product donations, other commercial access programs for licensed medicines or commercial supply of free products.
If you are a Healthcare Professional who would like to contact Kyowa Kirin regarding our Access to Medicines mechanisms, please contact us here.
Patients cannot make a request for Access to Medicines themselves and will need to contact their Healthcare Professional.
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