Specialist care centres can provide comprehensive, integrated, multidisciplinary care for patients, as well as information and support for family members. They aim to incorporate networks of all relevant medical disciplines within the core team. They have effective links with national networks of testing laboratories and other care centres at a national and international level.
Specialist nurses play a vital role in the day-to-day running of clinics and deal with many of the familial aspects of work with patients and family members. Physical therapists, speech therapists, occupational therapists and disease counsellors should also all be involved in supportive care for patients.
Everyone affected by Niemann-Pick disease in England is entitled to receive their clinical care at a Specialist Centre:
Adult Niemann-Pick Disease Patient Centres:
Paediatric Niemann-Pick Disease Patient Centres:
Scotland, Wales and Northern Ireland:
Arrangements are in place for patients from Scotland, Wales and Northern Ireland to be seen within the designated centres in England for diagnosis and clinical management. Decisions on funding treatment/access remain with the patient’s local health authority:
For further information visit the NHS Specialised Service Website.
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
OXFORD, UK / ACCESSWIRE / March 25, 2020 / IntraBio Inc., a late-stage biopharmaceutical company, today announced that the US Food and Drug Administration (FDA) has granted Fast Track designation to its lead compound (IB1001) for the treatment of Niemann-Pick disease Type C (NPC)...Read more