People affected by Rare Conditions often have complex medical needs, are required to travel and/or require speciailist equipment.
There are resources available for funding however sometimes there is still a gap.
The board at Rare Friends will be working on a simple small grants process to help bridge some of these gaps.
FNQ Cerebral Palsy Support Group
The FNQ Cerebral Palsy Support Group Inc. are a charitable organisation started by a small group of passionate parents of children with cerebral palsy.
In 2012, the group reached out to families with children affected by rare diseases, giving them support where previously there was none.
A percentage of proceeds will go to the FNQ CP League to assist in these programs. fnqcpsupportgroup.com
WHERE DOES THE MONEY GO?
The primary goal of this event is to raise awareness into rare conditions in Far North Queensland; to show support for those affected and to build a community of families and friends of those faced with rare conditions.
Because this is a primary goal, our event fees are low - its more important to us that you participate in the day!
We do however want to be able to give to those who help "Rare families" and provide assistance for locals affected by Rare Disease. Funds will be disbursed as follows;