Having a family member with a rare genetic condition can often be a lonely, isolating experience. Meeting with other families in a similar situation can be a vital avenue of support and result in lasting friendships. When a genetic condition is rare, affected families are often dotted around the country which means the costs and logistics of getting together can be tricky.
The Sandcastle Trust can provide support to rare genetic patient groups and small disorder specific charities to help fund family meet ups and fun days. Please can interested groups email us at firstname.lastname@example.org for more information.