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With today’s focus on Usher syndrome, we highlight the supportive role of UsherKids Australia in the lives of those affected. Learn about their mission: usherkidsaustralia.com . #RareDiseaseDay2024 #LightUpForRare #ShareYourColours #RareDiseaseDay #geneticallianceaustralia #raredisease

Did you know February is Ovarian Cancer Awareness Month and Today is Ovarian Cancer Aust Giving Day. . #RareDiseaseDay2024 #LightUpForRare #ShareYourColours #RareDiseaseDay #geneticallianceaustralia #raredisease

💙 Today, we honor every individual, every family, every support group that's part of our story. You inspire us, drive us, and remind us why our work matters. #RareDiseaseDay #35YearsStrong #RareDiseaseDay2024 #LightUpForRare #geneticallianceaustralia #raredisease

🌍 Today, we extend our heartfelt gratitude to all the incredible support groups out there. Your dedication and hard work in supporting those with rare diseases are truly inspiring. 🌟 #RareDiseaseDay2024 #LightUpForRare #RareDiseaseDay #geneticallianceaustralia #raredisease

Today is worldwide Rare Disease Day. 💚 🩷 💜 🩵 💙 . Please like and share this post to show your support! . #RareDiseaseDay2024 #LightUpForRare #ShareYourColours #RareDiseaseDay #geneticallianceaustralia #raredisease

The Australasian Lymphology Association continues to prioritise raising lymphoedema awareness. Our mission is to promote excellence in healthcare for people living with lymphoedema throughout Australia and New Zealand.

World Glaucoma Week 10-16 March 2024 Did you know Glaucoma is hereditary - you are 10x more likely to have glaucoma if you have a direct family member with glaucoma. glaucoma.org.au #GlaucomaWeek and #SavingSight

A Churchill Fellowship is for any Australian citizen or permanent resident to explore best practice or learn new skills from other countries. Be empowered to design your own project and share what you learnt with the community on return. Closes 1 May 2024 #Churchhill Trust

Inherited Retinal Disease Patient and Family Day 23 March 2024 This event includes several expert speakers to provide an update on current research Register: events.unsw.edu.au/event/inherite… #Retina Australia # Save Sight Institute # UsherKids Australia #Guide Dogs NSW #Guide Dogs NSW

Chronic kidney disease (CKD) is estimated to affect more than 850 million people worldwide and over 3.1 million deaths in 2019. Kidney disease ranks as the 8th leading cause of death, and it is projected to be the 5th leading cause of years of life lost by 2040.

The Hush Foundation invites fiction, non-fiction or poetry entries of up to 1,000 words on the theme: "kindness in healthcare.” Best entries will be published on literary merit and connection to transforming healthcare cultures. Closes 31 March 2024 hush.org.au/hush-writers-p…

Borjeson-Forssman-Lehmann syndrome (BFLS) is a rare genetic disorder caused by mutations in the PHF6 gene on the X chromosome. This natural study is the first step towards a therapy, we hope to be able to improve the lives of people living with BFLS.

*THREE DAYS LEFT* If you have experienced or are at risk of hereditary breast, ovarian, and or/prostate cancer Pink Hope want to hear your story! Help them drive positive change by completing the survey today. surveymonkey.com/r/hereditaryca… #survey #hereditarycancer #pinkhopeaus

Join CHARGE Syndrome Australasia at Novotel, Sydney Olympic Park, 23 - 25 August 2024, for peer-to-peer activities, knowledge sharing and learning sessions from local and international health professionals. View the program here: chargesyndrome.org.au/conference-abo…

🔔 Fragile X Association of Australia Inc and the Centre for Disability Studies are undertaking two surveys to shape the future for adults aging with #FragileXsyndrome. 🔔 Families can participate here: cdsau.qualtrics.com/jfe/form/SV_cB… Support team click here: cdsau.qualtrics.com/jfe/form/SV_bj…

👉 Is your family impacted by childhood dementia or know someone who is? Researchers need your input on its impact to shape future care. Please share! More info: childhooddementia.org/news/insight-r… #childhooddementia #research #parents #carers #dementia

Today is #WorldFragileXDay! 🌟 Join us in celebrating the Fragile X community and all who support them. Learn more: fragilex.org.au #FragileX #Awareness #Support

🌟 It's National Eosinophilic Week (Aug 4-10)! 🌟 Learn about eosinophils and how @ausEEOrg supports those with eosinophilic diseases. Check out landmarks lighting up pink & purple! #NEOSW2024 #EOSaware

🌟 Rare Disease Project ECHO® is back! These sessions offer valuable insights for all HCPs 🗓️ Upcoming topics: Sept 19: Mental Health and wellbeing Oct 17: Achieving Early Diagnosis Nov 7: Innovative Clinical Trials Dec 5: Clinical Yarning Register: airtable.com/app0tq9TK3DSMk…

Today we celebrate the incredible genetic counsellors who support families impacted by rare and ultra-rare conditions. GC's are the guiding light for many, offering not only information but also empathy and personalised care for families facing complex genetic diagnoses.