Research Release: Lived Experience of Long Chain Fatty Acid Oxidation Disorders
We are pleased to share the findings of our latest research “The Lived Experience of Long Chain Fatty Acid Oxidation Disorders”.
In this report, we share important findings from a survey conducted among the Long Chain Fatty Acid Oxidation Disorders(LC-FAOD) community, to better understand their lived experience of the condition and to build the evidence base.
Research Release: The Lived Experience of Thymidine Kinase 2 deficiency
We are pleased to share the findings of our latest research “The Lived Experience of Thymidine Kinase 2 deficiency”.
In this report, we share important findings from a survey conducted among the Thymidine Kinase 2 deficiency (TK2-d) community, to better understand their lived experience of the condition and to build the evidence base.
Research Release: The Lived Experience of Arginase-1 Deficiency
We are pleased to share the findings of our latest research “The Lived Experience of Arginase 1 Deficiency”.
In this report, we share important findings from a survey conducted among the arginase 1 deficiency (ARG1-D) community, to better understand their lived experience of the condition and to build the evidence base.
Research Release: The Lived Experience of Molybdenum Cofactor Deficiency Type A
We are pleased to share the findings of our latest research “The Lived Experience of Molybdenum Cofactor Deficiency Type A”.
In this report, we share important findings from a survey conducted among the molybdenum cofactor deficiency (MoCD) type A community, to better understand their lived experience of the condition and to increase the evidence base.
Research Release: The Impact of Cysteamine Treatments on Life with Cystinosis
We are happy to announce the results of our latest research, “The Impact of Different Cysteamine Formulations on the Lives of People Living with Cystinosis.”
This research announces important findings from a survey conducted in collaboration with Cystinosis Foundation UK and Kidney Research UK, aiming to better understand the day-to-day experiences of those living with cystinosis, as well as their parents and caregivers.
Understanding Patient & Carers Experiences with Primary hyperoxaluria type 1 (PH1) and Lumasiran
This insight report provides unparalleled insight into the lives of people living with Primary hyperoxaluria type 1 (PH1) and their experience of Lumasiran.
Understanding Patient & Carers Experiences with Hypophosphatasia & Strensiq
This insight report provides insight into the lives of people living with Hypophosphatasia and discusses people’s experience with Strensiq, a medication utilised to treat the condtion.
