Rare Disease Day will be celebrated on 28th February 2014.
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision- makers about rare diseases and their impact on patients’ lives. Over 70 countries participated in 2013 and we look forward to seeing even more in 2014.
For more information about Rare Disease Day events across Australia keep an eye on the website:
The GSNV works hard to connect individuals and families interested in sharing their experiences and insights with others. People interested in contacting others “in the same boat” can contact the GSNV to provide details and we will assist in making connections.
Idiopathic CD4 lymphocytopenia
EPP (early diagnosis)
If you would like to make contact with others in the same boat and share your experiences with the above conditions, please either contact the GSNV office by phoning (03) 8341 6315 or by emailing email@example.com.
For a listing of support groups in Victoria see the links page on the GSNV website: www.gsnv.org.au
We are committed to your privacy
No details will be published without your consent, and those that are published will not include personal contact details. We will obtain consent from both parties before connecting individuals and families.
Disclaimer The GSNV works to support contact between individuals and families to share experiences. However, in individual cases, there may be differences in approach and opinion. Those placed in contact are alone responsible for the views and opinion shared.
For more events please see our website, www.gnsv.org.au
About the GSNV
The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions. We assist individuals and families with the 'human', non clinical side of genetic diagnosis, living with a genetic condition, and gaining access to supports and services. The GSNV assists in the set up of new support groups and for those already established, helps to broaden awareness and assist in their activities. The GSNV is committed to improving the sense of isolation the community may feel in dealing with genetic conditions.
The GSNV is closely associated with a wide range of support groups, clinical genetic services and peak professional bodies.
Keeping up to Date
Please continue to notify GSNV of your change of contact details either by calling the GSNV office, or via email to firstname.lastname@example.org. We have launched an exciting new website and database but are still finalising the upgrade. Please bear with us as we make the updates.
The information and material presented in Bits and Pieces is intended for educational/information purposes only. The contents express the opinions of the authors who alone are responsible for the views expressed. GSNV does accept any legal responsibility for their contents.