Welcome

about us | mission statement | News 2011

The GSNV is excited to be working on a new Website.
We are currently under construction.
Some of our information on this web site may become out of date
We apologise for any inconvenience.

If you require any further information
please contact the GSNV on 8341 6315 or email info@gsnv.org.au

17 December 2010
From the GSNV President

The GSNV looks forward to 2011 and welcomes some fresh faces on committee. This brings us a whole lot of new opportunities and has fortunately stirred up a lot of new ideas and energy.

The Genetic Support Network of Victoria was set up to meet the needs of our members and the wider community affected by genetic conditions. We hope that 2011 will launch us on the next stage of our action for change.

Thanks to Lord Mayor’s Trust, at long last we can update the GSNV website and our database so we can far more efficiently share news with you all. We are also able to offer you more and more extensive Peer Support Education Training Workshops and a range of education sessions.

GSNV represents your interests on a number of community, network and government committees. Wherever possible, we develop our own independent or collaborative position statements on matters that affect individuals, families, Support Groups and health consumers. This year we have lobbied alongside a number of groups to have Life Saving Drugs made available to make changes to adults and children and to ensure fairness and equity in the health system.

In 2010 the GSNV rallied a number of key people and their opinions to put together a formal submission to the Productivity Commission on a National Disability Insurance Scheme (NDIS). We are grateful to all those who contributed and assisted greatly on this important document. We will continue to follow the debate and progress of the NDIS and have a commitment to communicate with our network as often as possible.

If you think that we could contribute to specific government enquiries or know of opportunities where we can represent your areas of interest, please let us know. We are also actively looking for more opportunities to work enthusiastically on collaborative projects such as delivering education sessions to health professionals and students, and to assisting with events.

Every day, the Genetic Support Network of Victoria staff responds to the needs of people who are touched by genetic conditions and rare diseases. We get about 25 requests for information or enquiries on average, every week. Many of these are calls from people who need to know more about rare conditions and help and support with the ‘non-medical’ side of living with genetic conditions: the human strain. We refer people to support groups and put them in touch with other individuals with experiences to share. Increasingly we look to help set up or support a new group. One of the greatest problems for families affected by genetic conditions is their isolation and sense of loneliness.

If you let us know, GSNV will help your groups and organisations to advertise their meetings and conferences in our quarterly newsletters, on our new website and in our regular e-bulletin, ‘Bits and Pieces’.

We are very grateful to our supporters, particularly the Department of Human Services, the Murdoch Children’s Research Institute and Genetic Health Services Victoria and through the generous donations from individuals, and membership subscriptions, and grants such as the Lord Mayor’s Fund, so that the important human and social support work of GSNV continues and gets better.

In 2011, GSNV will focus especially on building relationships with support groups and other peak bodies and seek grants and fundraising to fund the projects that will make the most difference to all of you.

What will be important in 2010 in terms of support for you, our community of people affected by genetic conditions and rare diseases?

Is it the government’s commitment to assess the NDIS (National Disability Insurance Scheme)? A new national safety net, ensuring peace of mind of all Australians should they or someone they love become severely disabled.
Or is the opportunity to connect with others sharing the journey more important? Are we meeting your needs for this? How can we do it better?
Will it be advocating for the rights, needs and services that people with genetic conditions simply must have if they are to live a decent life in the community?
Or should it be helping groups and committees to speak for themselves, their particular interest group or for all of those affected by genetic conditions?

The GSNV Committee is really keen to hear what is important to you or your support group. We are here to assist you and match our services with what may be unexpressed demand. So contact the GSNV Office via email at info@gsnv.org.au or call on (03) 8341 6315, and let us know what is important to you, and how we can help.

Moira Rayner
President

Welcome GSNV Committee Members 2010 - 2011

President - Moira Rayner - Moira Rayner & Associates
Vice President - Jan Hodgson MCRI Education & Research
Treasurer – Geraldine Allen - Individual
Secretary- Amanda Springer Public Health Genetics
Secretary - Alice Horwood
Public Officer Stephanie Shepley

General Committee Members

Christine Williams – Porphyria Association
Janina Simons Porphyria Society
Yvonne Waite Noah’s Ark,
Parent of child with PWS Kerri Carboon – Executive Director, Metabolic Dietary Disorders Association
Maria Triantafillou – Thalassaemia Australia

News from the GSNV Office
Have your contact details changed?

It's coming up to the New Year a new year and we are in the process of updating the contact details of all support groups listed on our website. Please assist us by emailing any changes to your groups title, address, phone no’s, website address, contact person and phone/email, so that we can make sure people are being referred correctly. Please email these changes to info@gsnv.org.au. Stephanie, our Genetic Support Worker will be calling Support Groups listed on our website to ensure that we have the correct contact details.

Need help starting a support group?

At GSNV we often receive enquiries from the public regarding how to start a new support group. GSNV has compiled some information on setting up a support group which will be a useful guide. Included is a link to an organisation called Connect Groups (see www.connectgroups.org.au) who have an excellent website with more detailed information on maintaining and growing your group, and information about setting up on-line support groups. Please feel free to contact us the GSNV office on (03) 8341 6315 with any questions or queries regarding the information provided, we will be more than happy to assist you where possible.

GSNV Small Grants Program

Each year, through money raised from memberships, GSNV is pleased to offer a limited number of small grants of up to $400 to Support Groups. To be eligible your group must be a current financial GSNV member. Please look out for details in our next newsletter; and please ensure that your membership is current if you wish to apply.

GSNV Membership

Has your membership lapsed? Membership is open to all members of the public. Please download the membership form from our website (see http://www.gsnv.org.au/pages/membership/membership.php) or call the office and we are more than happy to send out a renewal notice.

Moving Forward in 2011

We look forward to a fantastic 2011 with lots of communications and support group activity. We invite all groups and individuals to send through any communications, events and issues you would like us to promote. It is the sum total of the GSNV community that represents the value of our worth!

We look forward to a major relaunch of website and branding in 2011 and indeed hope to assist families, individuals and support groups in reaching their own full potential.

Louisa Di Pietro and GSNV Team