Setting up a support group
NZORD has created an overview to help patients and their carers establish a rare disease support group. The webpage describes what the role of a support group is, how to go about setting one up, and highlighting the benefits of peer support and connection. We can also offer advice on using online tools to enable connection between support group members where geographical distance is a barrier.
NZORD offers newly established support groups advice and links to information that will assist their sustainability and effectiveness.
“Support groups for patients with rare diseases can have an enormous positive impact,” says Relationship Manager Lisa Crawford.
“As a source of community information, advice and connection to others who understand your experience. These support groups offer so much hope which then enhances mental health and wellbeing.”
If you are considering setting up a support group for a specific rare disease, check our directory first to see if there is an existing group you can align with, then read the information on our guidance webpage.