Skip to main content
Home » Rare diseases » Finding new ways to manage a life-changing diagnosis

This page has been funded by Vifor Pharma, but editorial control lies with the contributors. Vifor only performed a medical accuracy review but was not otherwise involved in the content.

Julie Power

Patient Contact and Policy Officer, Vasculitis Ireland Awareness

For people living with rare autoimmune diseases such as ANCA-associated vasculitis, patient associations are providing invaluable support

There is no replacement for the relief we feel in being able to talk freely to others who live with the same issues and understand what we are going through.

Getting a diagnosis of ANCA-associated vasculitis can be life changing as we and our loved ones learn to adjust to treatments, the flare and remission aspect of our conditions, as well as the physical, psychological and social impacts which affect our daily lives.

There are many symptoms, not all of which are visible, and your future plans may need adjusting due to employment changes, medical appointments and managing daily life.

Providing education and support

At Vasculitis Ireland Awareness, we hold monthly Zoom meetings to allow people a chance to link and learn from others. They are informed about current vasculitis issues, treatments and research. They also hear from other patient groups, clinicians, researchers and academics. 

These meetings allow a chance for those involved in research or service development to come along and hear directly from the vasculitis community about what is important to them.

Vasculitis Ireland Awareness was set up in 2010 in response to the need to connect with others living with vasculitis. We are an all-Ireland support group and are registered as a charity in both jurisdictions.


Next article