Australian Rare Chromo Awareness Network (ARCAN) | Businesses

Australian Rare Chromo Awareness Network (ARCAN)

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25.01.2022 A new study suggests children with autism are twice as likely as their typical peers to experience chronic or repeated pain, and that it is more common for children with co-occuring developmental conditions. Spectrum

24.01.2022 Sanofi Genzyme and RVA Partner’s Syndromes Without A Name - SWAN Australia and Genetic Alliance Australia, invite you to join them for an evening of discussion ...and interaction with the rare disease community. RVA’s CEO, Nicole Millis, will be speaking at the event. The event will take place in Sydney at 6:30pm on Thursday, 5 March and will highlight gaps, and what we can do collectively and individually, to move forward. All members of the rare disease community are welcome to attend this event. See the flyer for more information and click here to register: http://bit.ly/2HOlHPR

23.01.2022 We recently spoke to rare disease families and clinicians around Australia about the importance of genetic testing in rare disease diagnosis. Here's what Belinda and daughter, Maddy, who is living with a rare disease, had to say: Syndromes Without A Name - SWAN Australia

22.01.2022 A community reminder: It’s perfectly ok NOT to prepare for home learning. For many of our ladybugs its far more important that they feel safe and supported at h...ome, and in some cases this means not doing any ‘school work’. School and home are very different places for some ladybugs, and therefore you may need to maintain that separation. It’s ok to keep busy and engaged in the ways that work best for you and your family - remember we all have differing needs and many of us are from Neurodivergent families. It’s ok to not be adding any school-related pressure into a scenario that may already be causing you and them significant anxiety. Do not feel pressured to live up to any one else’s expectations on how your days should look like. We appreciate that there are many ladybugs who are going to be upset about missing school, and who may genuinely want to continue their school work at home, and in that sense it is fanastic that there lots of resources being shared at the moment. Not all learning is traditional! Also, don’t forget the schools may also provide resources during this time. We have shared below some links and resources which are circulating around, for your future reference, if you do *choose* to use them. Feel free to add more below, or share what your take is going to be. Remember, do it your way. Resources Posted by SMPS mum Online resources: - BrainPop - Curiosity Stream - Tynker - Outschool - Udemy - iReady - Beast Academy (Math) - Creative Bug - Discovery Education YouTube Channels: - Crash Course Kids - Science Channel - SciShow Kids - National Geographic Kids - Free School - Geography Focus - TheBrainScoop - SciShow - Kids Learning Tube - Geeek Gurl Diaries - Mike Likes Science - Science Max - SoulPancake Lots of board games, library books (and Kindle), tinkering/upcycling with household junk, etc. Some resources to help with kids at home: *Scholastic has created a free learn-from-home site with 20+ days of learning and activities. https://classroommagazines.scholastic.com//learnathome.html *Pretend to travel the world..Go on a virtual tour of these 12 famous museums. https://www.travelandleisure.com//museums-with-virtual-tou *This is the awesome free curriculum that we use. Everything from preschool activities to 12th grade is here! https://allinonehomeschool.com/ *List of thinking games by grade: https://allinonehomeschool.com/thinking/ **More awesome free learning websites that we like to use** https://www.starfall.com/h/ https://www.abcya.com/ https://www.funbrain.com/ https://www.splashlearn.com/ https://www.storylineonline.net/ https://pbskids.org/ https://www.highlightskids.com/ https://kids.nationalgeographic.com/ https://www.coolmath4kids.com/ http://www.mathgametime.com/ https://www.uniteforliteracy.com/ http://www.literactive.com/Home/index.asp http://www.sciencekids.co.nz/ https://www.switchzoo.com/ https://www.seussville.com/ https://www.turtlediary.com/ https://www.e-learningforkids.org/ This was also recently shared from the home schooling community in the UK - FREE online education resources Khan Academy https://www.khanacademy.org Especially good for maths and computing for all ages but other subjects at Secondary level. Note this uses the U.S. grade system but it's mostly common material. BBC Learning http://www.bbc.co.uk/learning/coursesearch/ This site is old and no longer updated and yet there's so much still available, from language learning to BBC Bitesize for revision. No TV licence required except for content on BBC iPlayer. Futurelearn https://www.futurelearn.com Free to access 100s of courses, only pay to upgrade if you need a certificate in your name (own account from age 14+ but younger learners can use a parent account). Seneca https://www.senecalearning.com For those revising at GCSE or A level. Tons of free revision content. Paid access to higher level material. Openlearn https://www.open.edu/openlearn/ Free taster courses aimed at those considering Open University but everyone can access it. Adult level, but some e.g. nature and environment courses could well be of interest to young people. Blockly https://blockly.games Learn computer programming skills - fun and free. Scratch https://scratch.mit.edu/explore/projects/games/ Creative computer programming Ted Ed https://ed.ted.com All sorts of engaging educational videos National Geographic Kids https://www.natgeokids.com/uk/ Activities and quizzes for younger kids. Duolingo https://www.duolingo.com Learn languages for free. Web or app. Mystery Science https://mysteryscience.com Free science lessons The Kids Should See This https://thekidshouldseethis.com Wide range of cool educational videos Crash Course https://thecrashcourse.com You Tube videos on many subjects Crash Course Kids https://m.youtube.com/user/crashcoursekids As above for a younger audience Crest Awards https://www.crestawards.org Science awards you can complete from home. iDEA Awards https://idea.org.uk Digital enterprise award scheme you can complete online. Paw Print Badges https://www.pawprintbadges.co.uk Free challenge packs and other downloads. Many activities can be completed indoors. Badges cost but are optional. Tinkercad https://www.tinkercad.com All kinds of making. Prodigy Maths https://www.prodigygame.com Is in U.S. grades, but good for UK Primary age. Cbeebies Radio https://www.bbc.co.uk/cbeebies/radio Listening activities for the younger ones. Nature Detectives https://naturedetectives.woodlandtrust.org.uk/naturedetect/ A lot of these can be done in a garden, or if you can get to a remote forest location! British Council https://www.britishcouncil.org/school-resources/find Resources for English language learning Oxford Owl for Home https://www.oxfordowl.co.uk/for-home/ Lots of free resources for Primary age Big History Project https://www.bighistoryproject.com/home Aimed at Secondary age. Multi disciplinary activities. Geography Games https://world-geography-games.com/world.html Geography gaming! Blue Peter Badges https://www.bbc.co.uk/cbbc/joinin/about-blue-peter-badges If you have a stamp and a nearby post box. The Artful Parent https://www.facebook.com/artfulparent/ Good, free art activities Red Ted Art https://www.redtedart.com Easy arts and crafts for little ones The Imagination Tree https://theimaginationtree.com Creative art and craft activities for the very youngest. Toy Theater https://toytheater.com/ Educational online games DK Find Out https://www.dkfindout.com/uk/ Activities and quizzes Twinkl https://www.twinkl.co.uk This is more for printouts, and usually at a fee, but they are offering a month of free access to parents in the event of school closures.

19.01.2022 What a heart-warming moment! The loving friendship these little girls have is so precious.. Credit: Jukin Media

18.01.2022 This ‘COVID-19’ information for patients with rare genetic disorders is coming from the UK. Prof. Conny and researcher Aafke asked me to share it with you. General advice regarding Coronavirus (COVID-19) for patients with rare genetic disorders Includes patients with developmental disorders and undiagnosed developmental delay, rare single- gene disorders and chromosomal disorders....Continue reading

17.01.2022 Sydney ppl news ch 9 today has a story about a family fighting to implement compulsory genetic testing on babies

14.01.2022 He looked up at my husband and I said: "I think George has Hirschsprung disease. He is very sick and needs to transported to Sydney Children's Hospital immediately."

12.01.2022 A MOTHERS LOVE . . We had been trying to book her session since I launched Beauty with Purpose and we finally got to meet in person over the weekend.... Keira is a wife and mother of two and she is beautiful and strong. Her daughter Imogen has a rare genetic conditon called 6q25.3 deletion and her son Ashton has ASD. During her session she spoke about the past few years and everything she had gone through. She has gone through so much personally yet she is always there for her two kids and husband. Keira is amazing and has even started a FB page for Imogen to help others and to keep everyone updated of how Imy is doing. If you would like to follow her page its Inspiring Imogen. Thank you again @keirayvette for taking part of Beauty with Purpose and for sharing Imogens story. Your two children are so loved and are very blessed to have you and your husband as their parents. Lastly I would like to thank another SN mother @traceytakesphotos once again for capturing the amazing images!! She sent so many but I had to pick some of my favourites. Thank you for volunteering your time and amazing skills for Beauty with Purpose. . . #BeautyWithPurposeShow #BeautyWithPurpose #SpecialNeedsKids #SpecialNeedsMeetsBeauty #AdditionalNeedsCommunity #CarelKhairo #MuaWithADifference #MuaWithPurpose #MummyMakeover #DoWhatYouLove #ChampioningWomen #SpecialNeedsChildren #SpecialNeedsCommunity #HillsDistrictMums #ChampioningWomen #MakingADifference #GivingBackToTheCommunity #PricelineAustralia #RareConditions #CreatingAwareness #BeautyInsideOut #WakeUpAndMakeup #WorldWideMakeupArtists

08.01.2022 BREAKING - GREAT NEWS! Woolworths introduces a dedicated shopping hour across its stores to ensure the elderly and people with a disability don’t miss out on ...essential items, as shoppers continue to wipe supermarket shelves clean amid the coronavirus crisis. DETAILS: http://bit.ly/39SvGAj See more

07.01.2022 https://metro.co.uk//78-year-old-becomes-uks-oldest-man-w/

07.01.2022 At just 2 weeks old little Samantha has gained weight rapidly

05.01.2022 Just wanted to share this group with children with neurological conditions. Seen lots of friends attending brainwave Christmas party over the weekend & I knew nothing about it despite Imogen having seven different brain conditions. Thought there might be other families like us out there in Australia who would be interested https://brainwave.org.au/

05.01.2022 https://facebook.com/events/s/22q-mothers-retreat/654497468630592/?ti=icl

03.01.2022 It's International Day of Persons with Disabilities, and here Kiruna discusses ways to talk to your kids about disability.

01.01.2022 Hey everyone, I have created a separate IG account for Beauty with Purpose. Please share and follow my new account. All photos, videos etc will now be uploaded there instead of my existing hmua IG. Username: beauty with purpose_bycarelk Carel