The Association of the British Pharmaceutical Industry (ABPI) is the industry body for research-based bio-pharmaceutical companies. The ABPI issue guidelines that, amongst other things, govern what contact pharmaceutical companies can have with patients and their families. This means it is particularly important that they understand bleeding disorders.
They have commissioned an independent researcher to find out more about what patients and carers think of the treatments for rare diseases that their members develop. All bleeding disorders are rare but the survey will be particularly interesting for people with rarer factor deficiencies or platelet disorders.
The results of this survey will be published and use to raise the profile of rare diseases and orphan medicines.
There are two surveys to choose from;
- Survey for people with a rare condition who is over 16 years old.
- Survey for people who care for someone with a rare condition who is over 16 years old.
The survey’s close on the 25th of April.