I've been asked to post the following publicity for a hereditary ATTR carers' survey.
There is no connection to the NAC.Do you support or care for someone with hereditary ATTR amyloidosis?Acaster Lloyd, an independent research consultancy, is conducting a survey to help understand the impact of providing support to a hereditary ATTR amyloidosis patient on those who support and care for them. The survey is on behalf of Akcea Therapeutics, a drug manufacturer.They are looking for people who provide regular (at least weekly) unpaid practical and emotional support to a hereditary ATTR amyloidosis patient to complete an online survey. These individuals are often known as ‘informal carers’. If this describes you, and you’re living in the UK, please follow this link bit.ly/hATTRcarersurvey to share your views and experiences. The survey will ask you some general questions about you, your health, the health of the patient you support, and about your quality of life. It should take no more than 20 minutes to complete. Gaining a better understanding of the impact of caring for and supporting hereditary ATTR amyloidosis patients is extremely important, especially right now as the first new treatments for hereditary ATTR amyloidosis are currently under review by the NHS watchdog, NICE. The results from the survey will be fed into the NICE review to present a more complete picture of the impact of hereditary ATTR amyloidosis on all those who are affected by this rare and complex disease. To find out more and take part please go to bit.ly/hATTRcarersurvey
