Patient and Public Involvement Workshops

1. 27th February 2019

2. 20th November 2019

 

The National Centre for Human Retrovirology held its patient and public involvement workshop on the 27th February 2019 – which was Rare Diseases day. The workshop generated lots of interactive discussions with participants sharing their stories of navigating their HTLV condition.

 

Alex DeGromoboy, from the Multiple Sclerosis society, joined the workshop to share his story of getting a diagnosis and share his management strategies with the group. Participants feedback that they thoroughly enjoyed the workshop and found the discussions both stimulating and thought provoking.

 

On 20th November 2019, patients have been invited to hear feedback from the initial event in February, and to plan a course of future action.  This will also contain feedback from a WHO meeting held in Tokyo 13-15th November 2019, attended by international experts, to discuss the impact of HTLV infection on global health.

 

Please watch this space for any further information.