Genetic and Rare Disease Network in Maylands, Western Australia, Australia | Community organisation

Genetic and Rare Disease Network

Locality: Maylands, Western Australia, Australia

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25.01.2022 Today is Red Nose Day, visit https://rednoseday.org.au/ to find out how you can help.

24.01.2022 Great news, our Patient Pathways Telehealth Nurse is now taking bookings. The Patient Pathways nurse can help you with any questions and/or concerns you may have including: emotional support if you or someone you care about has a genetic, undiagnosed or rare disease how to manage life with a genetic, undiagnosed or rare disease... questions you may have about your, or the person you care for genetic, undiagnosed or rare disease how to find other organisations and resources that can help you or your families life with a genetic or rare condition help on guiding you through the healthcare system to access all the relevant services. To arrange a consultation phone 1300 75 50 50 (Mon-Fri) or online via https://gardn.org.au/patient-pathways/

23.01.2022 Here we are again folks! Have a lovely weekend

22.01.2022 Today is Jeans for Genes Day 1 in 20 kids is born with a birth defect or genetic disease - thats one in every classroom! Help to find tomorrows cures today: https://www.jeansforgenes.org.au/donate #jeansforgenesau

21.01.2022 We hope you all have a wonderful week

21.01.2022 We've received an email from someone requesting information about Wegener's granulomatosis. If this was you, please try to contact us again at [email protected] to confirm your email address, as our response to you is currently bouncing back.

21.01.2022 Are you impacted by childhood heart disease? HeartKids is creating new resources for individuals and families impacted by childhood heart disease. Childhood heart disease includes congenital heart disease and heart disease acquired during childhood. If you are impacted by childhood heart disease this includes people with a condition, as well as parents, carers, siblings and other relations you can help by completing this survey about your health information needs and pr...eferences. Complete the survey: https://www.surveymonkey.com/r/CS_SMQVJ9P

21.01.2022 Anyone else excited? It's.....

19.01.2022 Is everyone ready for a new week?

19.01.2022 Congratulations to Andrew Bannister and all the Perth Integrated Health Trisports Group who celebrated World PVNH day by doing the 40km Bridges Night Ride around the Perth landmarks that were all lit up pink thanks to Andrews amazing organisational skills! Thank you for all your support to GaRDN and we wish you good luck for your next challenge, doing the Starlight Tour de Kids, 1000km in 30 days https://tourdekids.org.au/andrew-thechamp #pvnhday #worldpvnhday #PerthIntegratedHealth Cycling Group (PIHCG)

19.01.2022 Another week....you've got this

19.01.2022 A huge thank you to Rachel Callander and Nathan Maddigan for sharing their experience with our lucky photography workshop winners on the weekend. It was wonderful meet the lovely families who joined us and to see some new connections established. We hope you all got as much out of the day as we did. Thank you for sharing your inspirational stories and for being part of a very special day. Stay tuned, we're hoping to share some beautiful images from the day with you soon.

18.01.2022 Anyone else dreaming of a weekend like this?

18.01.2022 A big thank you to those of you who provided feedback on the review of the regulation of certain In Vitro Device (IVD) self-tests in Australia. GaRDN collated the feedback, which helped to inform the Government's final policy position on changes to the supply of IVD self tests. A summary of the outcomes is available at the link below

17.01.2022 Who doesn't love a bit of Friday sparkle?!

16.01.2022 Have a wonderful week everyone

16.01.2022 Did you know GaRDN is now registered for Containers for Change? All you need to do to help GaRDN to raise much needed funds is save your suitable containers and drop off at a depot, bag drop or Reverse Vending Machine (a fun activity for the kids!). When you're finished just select donation and enter our scheme ID: C10437178 or look us up: Genetic and Rare Disease Network. For further information: https://www.containersforchange.com.au/wa/... Please feel free to share this post far and wide

14.01.2022 Here's to new beginnings

14.01.2022 Happy Friday everyone, hope your day is wonderful

14.01.2022 Andrew Bannister has always been a fantastic ambassador for GaRDN and raising rare disease awareness. Andrew's volunteering efforts have been recognised by the 7News Young Achiever Awards WA for which he is a finalist in the Masonic Care WA/Freemasons WA Community Service and Volunteering Award. If you would like to vote for Andrew - and you can every day until 25 May 2021 - please follow the prompts below.... Best of luck Andrew, we're all behind you!

13.01.2022 Grab your coffee and buckle in for the ride - Have a lovely week everyone

13.01.2022 The team at GaRDN would like to extend a warm welcome to our new member organisation, Leukodystrophy Resource Research Organisation Incorporated. For further information: https://gardn.org.au/support-groups/directory/

13.01.2022 That silly season feeling is well and truly upon us - take some time for you this weekend

13.01.2022 Goals for the week?

12.01.2022 ***Opportunity to participate in research*** The University of Technology Sydney (UTS) is conducting a research project looking at the experiences of pregnant women and new mothers with cancer. If you are interested in participating, please see the information from UTS below: Cancer in pregnancy: mothers Reflections and healthcare Experiences (CaRE)... Are you an Australian woman who has been diagnosed with cancer during your pregnancy? If so, would you like to tell your story and be part of our study? We are conducting a research project because there is very little information available about women with cancer in pregnancy. It is important to know about womens experiences, to better understand the needs of pregnant women and new mothers with cancer. The study is being conducted by the University of Technology Sydney (UTS), as part a larger study funded by The Cancer Council NSW. If youd like to take part in this research project, it will involve participating in a phone conversation with an interviewer to talk about your experiences. All information collected will be de-identified, so your name and details will be kept confidential and privacy is assured. If you would like know more about the study or if you are interested in participating, please contact us by email: [email protected] or [email protected]

11.01.2022 Opportunity for Input MOBILITY AND ACCESSIBILITY FOR CHILDREN IN AUSTRALIA The rights of children with disability and medical conditions to safe and accessible transport are not equal to children without disability. Mobility and Accessibility for Children in Australia Inc. (MACA) is a not-for-profit organisation dedicated to supporting and advocating for the right to safe and accessible transport for children with disability (and/or medical conditions). MACA is responsible f...or delivering a national information resource supporting the rights of all children to safe and accessible transport and participation in community life. To achieve this, MACA needs your help. If you are a parent, health professional, organisation or government agency who either transport children or have a responsibility relating to the transport of children with disability and medical conditions, please consider their national survey. Link below See more

11.01.2022 Get your Father's Day wrapped up, plus give a little extra to support our fundraising. With every Entertainment Membership purchased through us, we receive an extra $10 or $20 on top of our 20% we already get! https://www.entertainmentbook.com.au/orderbooks/9644k20

11.01.2022 Funding opportunity for patient organisations and support groups who represent more than 50 families with a rare Inborn Error of Metabolism for modest financial support for their events or parent/carer projects. These are one-off donation and not a grant and will be awarded twice a year. The current application round closes on 1 September 2020 https://www.ssiem.org/about-us/awards/patient-group-support

10.01.2022 ....and while we're talking about Andrew Bannister, we're very excited to let you know that he is now a finalist in the 7NEWS Young Achiever Awards - Community Service and Volunteering Award. A massive congrats to you Andrew, you deserve every bit of this recognition.

09.01.2022 Have a lovely Monday

09.01.2022 Best of luck to Andrew Bannister who is riding in the Starlight Tour de Kids challenge of 1000km in 30 days, starting on 1 September. Andrew has 3 Rare Brain malformations. He is an Australian Elite Para cyclist who rides a racing trike. He has been riding for 6 years and won the 2019 Austraila Para cycling series. He is doing the Tour De kids to raise money for sick kids to make them happy and also to give back to the community.

08.01.2022 Fantastic news. Genetic, Undiagnosed and Rare Disease Collaborative (GUARD) which is made up of Genetic Alliance Australia (QLD), Genetic and Rare Disease Network (WA), Genetic Support Network of Victoria (GSNV), and Syndromes Without A Name - SWAN Australia are now part of the Patient Pathways Program. We are working with the Centre for Community-Driven Research to implement this program which will provide a pathway for patients to access essential services and care via a sp...ecialist telehealth nurse. Contact one of our organisations to see if you would benefit from this program and once our telehealth nurse is on board we will arrange a patient pathways consultation. Patient Pathways is being funded by the Australian Department of Health following an announcement by the Hon Greg Hunt MP, Minister for Health.

08.01.2022 BONUS OFFER... Say hello to 12 months of savings! Join Entertainment to support our organisation and get a bonus $10 or $20 Priceline eGift Card! https://www.entertainmentbook.com.au/orderbooks/9644k20

07.01.2022 Today is Fragile X Awareness Day

07.01.2022 Hope you're ready to jump in to some weekend fun. Have a great one everyone!

06.01.2022 There's always something to celebrate on a Friday

06.01.2022 Have a look at this infographic created by EURORDIS-Rare Diseases Europe. Does this look familiar to some of you?

04.01.2022 Today is Daffodil Day

03.01.2022 ***Opportunity to participate in research*** A study looking a quality of life for those living with Superficial Siderosis conducted by a clinical researcher at University College London (UK) For further information or to participate; https://redcap.slms.ucl.ac.uk/surveys/ and use the password MAT4YWY9R

03.01.2022 Smile, it's Friday

03.01.2022 Another gorgeous art competition winner with her prize tote bag. Penny, thank you for the lovely art work, we're so glad to see you are enjoying your prize.

02.01.2022 The team at GaRDN would like to extend a warm welcome to our new member organisation, The Téa Lake and The Rare Disease Association Inc. For further information: https://gardn.org.au/support-groups/directory/

02.01.2022 New week, new start

02.01.2022 We see you. Thanks Cystinosis Support Group Australia for all you do and this great post.