When you, your child or loved one is diagnosed with Niemann-Pick disease it can have a profound effect on your whole family. For many people, a diagnosis of Niemann-Pick disease does not happen instantly and can come at the end of weeks or months of tests and investigations.
In many cases this can be the point from which you begin to contemplate the future…
During this period of adjustment you and your family may face what feels like a never-ending round of appointments as you begin to meet with the many professionals who will form a network of care around you or your loved one and you may find yourself having to tell your story time and time again. Hearing the news that your child or family member has a life-affecting disease, but that no one can tell you the exact path the disease will take, may make you feel that your hopes and dreams have been shattered.
At this time there is a lot to think about. Diagnosis comes at a point when you may not be capable of thinking clearly or taking information in.
We have people dedicated to support you to digest all the information:
If you would like to speak to someone about any aspect of the disease:
We have received the following statement from Mallinckrodt Pharmaceuticals, stating their intention to discontinue clinical development of adrabetadex (VTS-270) for Niemann-Pick Type C1 disease (NPC), effective immediately. We understand that this will be very difficult news for many within our community; the NPUK team will be available if you would like to contact us: email email@example.com or telephone 0191 415 06 93.Read more
The government has just announced a new UK Disability Survey and we want to hear from as many people as possible. They are particularly keen to hear from disabled people, their carers, friends and family but views from the wider public are also very welcome. The survey will remain open until 23rd April, and all views will be used to shape the delivery of the plans we set out in the Strategy with those that we receive by 13th February informing its development.Read more