Overview of the current situation
Earlier this year, we received notification of a medication shortage affecting supply of desmopressin nasal spray. This shortage is expected to be in place until September 2025 and will likely have significant impacts for our community members. You can read more about this shortage here.
Since then, we have received numerous messages of concern from our community, who are understandably worried about the impact that this supply shortage will have, either for themselves or their loved ones.
What we're doing
As a patient advocacy and support organisation, pushing for action on behalf of our community is an important part of what we do. In April of this year, we sent a letter to the Secretary of State for Health and Social Care, Wes Streeting, to raise our concerns about this supply issue and the physical and psychological impacts this is having on our community. We also queried what steps had been taken to prevent this and what was now being done to resolve the situation.
This letter was endorsed by the Society for Endocrinology and was co-signed by members of our Medical Committee, including Professor Stephanie Baldeweg, Professor John Wass, and Dr Robert Murray.
We will continue to provide updates on this situation and will look for further ways to advocate on behalf of our community members.
Where can I find more support?
We understand that medication shortages can cause a lot of stress and worry. If you would like to talk to someone or have queries about how this shortage may affect you, please get in touch with one of our helplines.
For more information and support, please also visit our psychological support page.
What is this survey?
In 2022, the Endocrine Society and the global 'Working Group for Renaming Diabetes Insipidus' recommended a name change from diabetes insipidus (CDI) to Arginine Vasopressin Deficiency (AVP deficiency, AVP-D) in order to better reflect the condition’s pathophysiology and avoid confusion with diabetes mellitus.
But has this change been widely adopted in clinical practice? Is there still confusion between the two terms in 2025? Do healthcare professionals and patients understand how to safely manage AVP-D and desmopressin (and avoid complications like hyponatremia and hypernatremia)?
🌎 This global survey aims to find out!
Researchers wish to gather insights from clinicians on how AVP deficiency is understood, diagnosed, and managed across specialties (both endocrine and non-endocrine). If you are a healthcare professional, your participation will help improve patient education and clinical practices for this rare condition.
The survey takes just a few minutes, and your responses are anonymous. You can reply to the survey here: https://feedback.surveylab.com/92c/HCP/AVP-D/SURVEY/
Not a clinician but want to get involved? You can share this survey with your healthcare providers (endocrinologists, GPs, nurses, pharmacists) and ask them to submit a response! You can share the URL link to this page or ask them to scan the QR code below.
Scan or share this QR code to access the survey.