OCTOBER 2021, ISSUE 10
BITS 'N PIECES
A MONTHLY E-NEWSLETTER FROM THE GENETIC SUPPORT NETWORK OF VICTORIA
OCTOBER 2021 NEWS AND UPDATES: P1 MESSAGE FROM OUR CEO P2 COMMUNITY RESOURCES TO SHARE P3
GRANTS & FUNDING
P11 MARGARET SAHAAR GRANT P12
MASTER STUDENT REFLECTION
UN RESOLUTION CALL TO ACTION
Many of our support group teams have had wonderful achievements through partnerships this year and we hope to bring these to you in our ‘Good News’ Addition – December as we close out the year with gratitude and celebration. Please share your story with us at firstname.lastname@example.org
A MESSAGE FROM MONICA FERRIE CEO
Woohoo – like butterflies we are about to emerge. Different and to experience the world in new ways. Its amazing that in times where it often felt like every day was the same that we have all been so busy and active. And the diversity of what we’ve achieved is mind-boggling.And all of that is in top of what were already extraordinarily busy lives. It’s humbling to reflect on the volume of work and productivity of our community during strange and challenging times. But you have always stood up, haven’t you, always been there to fight the fight, always been there to drive change – one step, sometimes one millimetre at a time. If not us, then who! As I shared last month, I’m a Lord of the Rings tragic and another line I love is “Even the smallest person can change the course of the future”. While I totally agree with that, one thing I have definitely learned over my time at the GSNV is that it’s much easier and more rewarding to be changing the course of the future in collaborative and partnering relationships.This year we have focussed on who support groups need on their team and how to build the team.
Thank you to all for your response to our bringing together a community response and advocacy for the National Medicines Policy review and the United Nations Declaration for people living with rare disease. We have also been collecting your 2022 priorities via a short survey to assist us to plan how we can make sure we are supporting your priorities and future focus. Please feel free to email me if you haven’t seen the survey or had the opportunity to complete it. Monica.email@example.com I’m looking forward to seeing some loved ones, sharing some sunshine and laughter and hugs from my two beautiful boys. I hope you have some special things on your horizon too. Please stay safe and well. I hope our paths will literally cross soon! Stay safe and well, Monica
“EVEN THE SMALLEST PERSON CAN CHANGE THE COURSE OF THE FUTURE” (C) WARNER BROS, NLC
Community Resources to Share
Patient Pathways Telehealth Nurse review
CCDR will be facilitating a joint budget submission to fund the Patient Pathways Telehealth
ACCESSING JUSTICE IN RURAL AND REMOTE AREAS IN VICTORIA:
THE EXPERIENCES OF WORKERS FROM DISABILITY, ADVOCACY AND VICTIM/SURVIVOR SUPPORT SERVICES SURVEY
• Do you work in a disability, advocacy or victim/survivor support
nurse program. You can find
additional information about the
been victim/survivor of crime in the last 5 years?
program in A this newsletter on page 19.
• Have any of the people with disabilities that you work with
• Do the people with disabilities that you work with, reside in a rural, regional or remote location?
If you have answered yes, to these questions, you are invited to participate in a survey.
The extended date for submissions is 5 November 2021.
Scholarships for Justice Health Conference The Public Health Association (PHAA) SIG is pleased to offer funding for scholarships to attend the virtual Justice Health Conference 2021 There are up to 8 scholarships for eligible participants, for complimentary virtual registration for the Justice Health Conference 2021 (valued at $145 each). The scholarships have been developed to support the participation of People with lived experience of incarceration People from an Aboriginal and/or Torres Strait Islander background Students, studying or interested in public health. PHAA Members preferred, however not essential. WHEN: Wed, 3 Nov - Thurs, 4 Nov 2021
To apply, please download the form on the conference website and return to firstname.lastname@example.org by 11:59pm AEDT, Sunday 17 October 2021
Complete the survey which will take approximately 15-20 mins to complete.
THE MCKELL INSTITUTE UPDATE TO THEIR 2014 REPORT INTO FUNDING FOR RARE DISEASE THERAPIES IN AUSTRALIA The McKell Institute are producing an update to their 2014 Report into Funding for Rare Disease Therapies in Australia and are seeking case studies from rare disease patient groups who have experienced challenges in accessing suitable treatments in a timely fashion. CCDR will be drawing on patient experience data collected in our PEEK repository to support this work.
If your organisation or patients in your network are interested in sharing your experiences for the McKell Institute report, please contact Kate Holliday (email@example.com)
Is my support group eligible for the Grant? This grant is open to all registered GSNV members for the period 2021- 2022. You can register your membership application through our website www.gsnv.org.au/membership or by simply emailing firstname.lastname@example.org. Once this has been processed you are eligible to then apply. How do I request a grant application form? Grant application forms will be available in November through our website so please check our communications regularly for more information
Please share this survey within your networks as we are keen to get abroad spectrum of input into our future database from Healthcare professionals and researchers'
PRACTICAL WELLNESS MONTH HOSTED BY THE GSNV IN OCTOBER
HEAD TO THE GSNV EVENTS PAGE FOR AN UPDATE AND RESOURCES
GENOMICS IN SCHOOLS EDUCATING THE NEXT GENERATION
THE GSNV IS EXCITED TO BRING EXTENDED LIVED EXPERIENCE OF GENOMICS INTO VICTORIAN HIGH SCHOOLS AND TO RAISE THE AWARENESS OF NEW AND EMERGING TECHNOLOGIES IN HEALTH AND SOCIETY.
PLEASE SHARE WITHIN YOUR NETWORKS BY DIRECTING THEM TO HTTP://WWW.THEGENETICLINK.ORG.AU/EDUCATORS
Volunteer Profile INTRODUCING JASLYN FERGUSON
Consultation feedback open now through November
Are you a parent of a child with a developmental and epileptic encephalopathy or genetic epilepsy? Then we want to hear from you! We’re working with @The Royal Children's Hospital, Melbourne, @Genetic Epilepsy Team Australia - GETA, @Murdoch Children's Research Institute - MCRI and @Australian Genomics to find out more about your experiences of caring for a child with complex needs. Your feedback will help us advocate for an improved Australian healthcare system, and for a greater understanding of rare and genetic epilepsies. Complete the survey by following the link HERE:
THE REPORT RECOMMENDATIONS (HTTPS://CONSULTATIONS.HEALTH.GOV.AU/PRIMARYCARE-MENTAL-HEALTH-DIVISION/DRAFT-PRIMARY-HEALTH-CARE-10-YEARPLAN/SUPPORTING_DOCUMENTS/PRIMARY%20HEALTH%20REFORM%20STEERING%2 0GROUP%20%20RECOMMENDATIONS%20SEPTEMBER%202021.PDF) DETAILS THE PRIMARY HEALTH REFORM STEERING GROUP (THE STEERING GROUP) RECOMMENDATIONS ON THE DEVELOPMENT OF THE GOVERNMENT’S PRIMARY HEALTH CARE 10 YEAR PLAN (10 YEAR PLAN) AND IMPLEMENTATION OF VOLUNTARY PATIENT REGISTRATION (VPR), WHICH AIMS TO STRENGTHEN OUR WORLD-CLASS PRIMARY HEALTH CARE SYSTEM IN ORDER TO DELIVER THE BEST POSSIBLE HEALTH OUTCOMES FOR ALL AUSTRALIANS