It’s our Birthday!
Brett | Feb. 28, 2018
On the 28th February we celebrated our 1st Birthday!
We have had a great first year and we’d like to thank you for being part of our online Noonan Syndrome Community.
Here are some of our accomplishments during our first 12 months:
- Provided medical and educational resources for people with NS, their caregivers and health professionals
- Advocated for NS patients and assisted with diagnosis, treatment, IEPS and access to services in Algeria, America, Australia, Brazil, Columbia, France, Mexico, Sweden and Thailand
- Provided lectures and presentations on Noonan Syndrome for health professionals
- Assisted with the creation of an online Noonan Syndrome referral pathway for GPs and Pediatricians in Western Australia in collaboration with the Western Australia Primary Healthcare Alliance (WAPHA)
- Assisted the National Human Genome Research Institute (NHGRI) in collecting data for facial analysis diagnostic software; a revolutionary new tool for Noonan Syndrome and rare diseases in general
- Helped many people with NS and their caregivers find and utilise local healthcare services and networks
We have been so pleased to receive your messages of support and praise for our efforts and we look forward to continuing to work to assist people with NS and their caregivers in any way we can.
Communicating with and meeting people with NS from around the world has been so rewarding and it makes us feel like we are part of one big ‘family’. Regardless of culture, race or nationality we are all connected by this disease and it is comforting and inspiring to be part of the online Noonan Syndrome Community.
If you would like to donate or ask others to donate to assist our efforts you can do so here: https://www.mycause.com.au/payment/charity/25111
Please note we are a not-for-profit organisation and all proceeds go towards operating our website, creating resources and assisting people with Noonan Syndrome access and receive services.
Thanks again for being part of our Association and our support community for people with NS and we look forward to many more productive years to come.
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