This year we returned to Wyboston Lakes, Bedfordshire, over the weekend of 20th-22nd September 2019, to celebrate our 26th Conference! Wyboston Lakes is one of our favourite locations, with many memories made over the years, and we look forward to welcoming friends old and new, those newly diagnosed, living with Niemann-Pick or those that have experienced bereavement. This year’s Conference once again offered the opportunity to hear the latest developments regarding therapies and clinical trials for ASMD Niemann-Pick disease types A and B, and Niemann-Pick disease type C, plus related care issues, breakout sessions and workshops. Individuals and families wishing to attend should fill out the form, here.
The Interactive Workshop on Niemann-Pick Diseases, an event for professional delegates only, took place on Friday 21st September. Hosted by Professor Fran Platt, University of Oxford, the meeting will feature clinical and scientific presentations and workshops on relevant topics, including clinical management, research and potential therapies. Clinicians and health professionals wishing to attend, should fill out the form here.
If you would like further information on the Annual Family Conference & Interactive Workshop please contact NPUK directly by email at: firstname.lastname@example.org, or by phone on: 0191 415 0693.
At this time of social distancing, it has never been more important to stay in touch. Being able to see each other’s faces and to reach out virtually to those we love and miss is essential. This virus may be isolating us but it is also uniting us – more than ever, we are in this together. We are vulnerable together, anxious together, sad together, scared together, and – most importantly - hopeful...Read more
In the days and weeks to come, Orphazyme will continue to communicate openly with patient organizations and clinical trial investigators around the globe to share the latest information regarding our efforts as the situation develops. Meanwhile please utilize attached FAQs to answer questions if any about our trials...Read more