Immedica shares know-how and expertise with individuals with Urea Cycle Disorders

Knowing that something is not right is hard. Sometimes it takes a long time before a patient gets the correct diagnosis. Being diagnosed with a rare, life-changing, and severe disease, like Urea Cycle Disorders (UCDs), might come as a shock. In that turmoil, it may be difficult for the patients and their families to sort out all the medical information suddenly overwhelming them.

“We see it as our responsibility to provide information that is relevant to helping patients cope with their conditions,” says Johan Wigren, Global Brand Director at Immedica.

Immedica values patient centricity and our recently launched disease awareness site, www.ucdandyou.com, demonstrates the importance of developing and providing information that is engaging, relevant and easy to access.

  • 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.