Celebrating the invaluable work of support group leads

He aha te mea nui o te ao? He tangata he tangata he tangata!

On the very rarest of Rare Disease Days, 29 February, Rare Disorders NZ could not imagine a more fitting way to mark the day than by bringing together support group leads from across the country for a morning tea to acknowledge the invaluable work they do providing guidance, support and friendship to so many people living with rare disorders in Aotearoa.

It is estimated that around 300,000 New Zealanders live with at least one of over 7,000 known rare disorders. That is a substantial group of people - representing 6% of the population, yet it can feel incredibly isolating and lonely living with a rare disorder, because so few people respectively live with each disorder.

This is where patient support groups play such a pivotal role in wellbeing. Being connected to a support group with others living with the same condition enables people to feel understood, to share knowledge, experiences, worries and hopes. Feelings of loneliness and isolation lessen. The benefits of these support groups can not be overstated, yet they rely on the mahi of volunteers, with many receiving no funding support at all.

Our 2023 Voice of Rare Disorders Survey found that while 63% of people or their carers thought that connection with others with the same condition was important, only 37% felt well-connected to others with the condition.

Rare Disorders NZ helps facilitate connection to support groups and has over 160 support groups within its collective. If you would like to know more about the support groups or to find a support group for you, contact enquiries@raredisorders.org.nz