Coeliac Australia’s Post

Batten disease has no cure, and there is only one FDA-approved treatment (CLN2), but current research and clinical trials provide optimism for the future. Research studies for every CLN type will be available for families to participate in at the Annual Family Conference in July. 🔗 https://ow.ly/Tb1J50S1bjV #BattenDay2024 #BattenAdvocatesForACure #BattenDisease #BattenAwareness

Contribute to the future of Inherited Retinal Disease research by sharing what is most important to you. This survey is a national collaboration asking people living with an IRD, health professionals who work with them and their families and caregivers about what research is most important to them. Follow the link below to learn more. https://ow.ly/hxwK50Q6HOb

There are 6000+ known rare diseases that affect over 300 million people around the world. On this #RareDiseaseDay2024, we stand with the patient-led initiative to raise awareness and take action. Advancement in precision medicine is crucial for providing tailored treatments and therapies for individual patients. This progress is a leap towards hope and personalized solutions for those facing rare conditions. Let's unite in advocating for continued research, innovation, and awareness to transform the landscape of rare disease care. Rare Disease Day #precisionmedicine #rarediseaseawareness #healthcareinnovation

🆕 @Official_ASAS study, as a result of a Young ASAS Research Project, highlights that overall health and function are similarly affected in patients with r-axSpA and nr-axSpA, underlining the concept of axSpA as one disease. 🔗 https://lnkd.in/eqRrkktg

An in-depth exploration of the aHUS Patients’ Global Research Agenda, this series of articles dives deeply into 15 key questions that patients & caregivers would like researchers and clinicians to prioritize. https://lnkd.in/eiCkR9Mg 29 Feb 2024 is world Rare Disease Day!

Receiving expert care early in your rare kidney disease (RKD) diagnosis is critical— Kidney Health Gateway has you covered! Kidney Health Gateway can help you find the care you deserve that’s local to you. This helpful tool connects those affected by RKD with clinical trials and expert care in their area to assure they receive the help they need. Exploring can also help: 🔷 Find the right team and treatment options for your individual needs based on your diagnosis. 🔷 Set you on the right track to support ongoing research. 🔷 Avoid the hassle of scrolling through pages and pages of information just to find what you need, it’s easy to navigate! Click the link below to explore more at Kidney Health Gateway! https://lnkd.in/gWJJpNu2

On World Bronchiectasis Day 2024, international respiratory societies are bringing awareness to this chronic disease, and discuss ways to reduce the burden of bronchiectasis for patients and their families worldwide. This year’s World Bronchiectasis Day theme is focused on research and the importance of participation in clinical trials, how research can impact innovation in bronchiectasis diagnosis and treatment, and how registries work to aid research efforts. Find out more: https://lnkd.in/eGgFnWJj #WorldBronchiectasisDay

Medical News Disease X Is More Dangerous Than Covid-19, It May Affect 50 Million Lives, 'Stay Alert' Disease X poses a greater threat than COVID-19, potentially impacting 50 million lives. Stay vigilant! 💪🦠 Submit your Articles in our upcoming issues. Submit #Manuscripts or Articles in our Journals : [email protected] #DiseaseX #StayAlert

Call for Papers: Special Issue on Patient-Centered Outcomes! Papers should critically examine relevant exposures and interventions with a focus on patient-centered outcomes. Other patient-centered topics will also be prioritized for this collection, including availability of services, patient-centered technologies, and manuscripts focusing on disease burden. Submissions are due by December 1, 2024!

#YoungMembersGroup author highlights: Drs. Phuenpathom & Sringean (1st & last authors). They emphasize the importance of comprehensive clinical exam for tetanus, a fatal yet treatable disease more common in low-income countries. https://lnkd.in/emuWxihY