The Genetic and Rare Disease Network actively facilitates the development of Genetic and Rare Disease Support Groups by providing expertise, information and technology including office facilities and meeting room that can be accessed by members to further enable and support their activities.
We are able to assist groups with the development of resources such as information packages, pamphlets and the printing of promotional materials. Members can publish articles and advertise and promote their Support Group’s activities on the Genetic and Rare Disease Network website and in our newsletter ‘The Advocate’.
Staff are on hand to assist groups in researching information regarding particular genetic conditions or predispositions and rare disease, and help keep members aware of matters of interest such as changes of legislation etc. There are no fees payable to become a member of the Genetic and Rare Disease Network at this time.
Resources for support groups include:
- Computer Resources
- Grants and Funding
- Managing Community Groups
- Technical Resources
- Websites – free websites for community groups.
Find a Support Group or Support Organisation
Information on support groups and support organisations and how to contact them
GaRDN offer the Link Line service which is published in our quarterly Newsletter The Advocate. The Link Line provides a supportive and confidential means of connecting individuals and families for whom no known genetic or rare disease support group exists.