To help the patient and all those affected by the disease, Immedica has gathered know-how and expertise within the area and launched the site www.ucdandyou.com. Both caregivers and patients will find information that helps understand the disease and the importance of adhering to treatment. Important is also getting support in managing the condition in their everyday lives. Johan Wigren continues:
Key in our work has been to understand the challenges that patients and families are facing. Based on dialogues with both patient representatives and health care professionals we aim to provide information that is:
- relevant
- pedagogical
- practical and useful
- easy to access
Examples of resources Immedica has developed so far are the website ucdandyou.com and a low-protein cookbook.
Immedica is acting globally and, therefore, cultural adaptation is another important consideration in our patient-centric work. To make materials available that are culturally relevant to improve patient centricity is an area where we continuously can improve.
More facts about UCDs
- UCDs are rare, severe disorders comprising a group of inherited deficiencies of one of the enzymes or transporters involved in the urea cycle, which converts ammonia to urea. UCDs are typically presenting neonatally but may present at different ages.
- Treatment of UCDs aims to maintain stable metabolic control, eliminate chronic complications, and achieve normal development and growth.
- Long-term management of UCDs includes restrictive protein consumption, pharmacological interventions, and, in some cases, liver transplantation.