Australasian Society of Clinical Immunology and Allergy’s Post

Just read this editorial in Lancet, and its true that despite all of the progress in diagnosis -to which many of us are devoted- and the incentives and investments made to facilitate the development of treatments, there is still a long way to go, also on support for carers and parents of these children, and adults living with rare diseases. As this editorial calls out a collective approach is needed, and it will continue to be a long run, that requires everyday comitment! #rarediseaseday The landscape for rare diseases in 2024 https://lnkd.in/ezaYfqh8

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

This is the amount we will offer to the first medical researcher who proves that Candida overgrowth is not a root cause of several poorly understood syndromes and inflammatory diseases. Prove us wrong: https://lnkd.in/grJhR4m2 Our Terms & Conditions are applicable. #CandidaChallenge #AdvancingMedicine

check out this fantastic update of a difficult clinical topic! for free! and join MSGS as member! at https://msgs.group!

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

⁉️ Did you know there are over 6000 identified rare diseases? Today marks an important date for people affected by rare diseases worldwide! It's #RareDiseaseDay! 🌐 🔊 Let's raise #awareness and turn the spotlight on all those affected by a rare disease, their relatives, #healthcare professionals and medical researchers. At #ProBioGen and #MiGenTra we're dedicated to pioneering solutions that exceed boundaries, offering hope for those with unmet medical needs and healing to all. We believe in #innovation and cutting-edge technologies to jointly accelerate the development of tomorrow's treatments of diseases that have yet to see a cure. 🌱 🫶 #rarediseaseday #innovationforimpact #CareBeyondRare

🔬🩺 Professional Insight: Explore the complex journey of diagnosis and innovative treatment in pediatric complex lymphatic anomalies through Ioana and Maya's story. Their international quest for a cure highlights the critical need for specialized care and collaboration in rare diseases. Full article: bit.ly/3Rt1mnr #HealthcareInnovation #PatientCare #MedicalResearch #CLA #HealthJourney #NeverGiveUp #CLAawareness #ComplexLymphaticAnomalies

Frank Watanabe emphasizes the unique challenges faced by those with dermatologic diseases and highlights how dermatologists and their patients deserve the dedicated support of specialized companies. Listen to the whole episode here: https://lnkd.in/g4aJagez

Rare diseases individually affect a small number of people, but collectively they affect more than 300 million people worldwide. They pose significant challenges for patients and medical professionals. The #Medcomms community can play a key role in helping patients with rare diseases by crafting clear, tailored disease information for patients and their families, and by raising the awareness of rare diseases collectively and individually. 📰 Read our interview: To mark #RareDiseaseDay 2024, we spoke with Director of nspm UK, Karen Holmes, to gain insights into how understanding the nuances of communicating about rare diseases can help us address the complex challenges in this significant therapeutic area. https://lnkd.in/gBuem4vu 💪 Rare is Many, Rare is Strong, Rare is Proud! #rarediseases #healthcarecommunications #medicalcommunications #sciencecommunications #rarediseaseawareness #shareyourcolours

Exciting news: new GPER research has been published in Australia! We outline how the current care model impacts disease management and patients' quality of life via a survey of 265 Australian patients and caregivers to capture the experience of managing atopic dermatitis (AD) in Australia. OUR FINDINGS: ➡️ Patients report an unsatisfactory quality of life and a high burden of disease with poor long-term control and low treatment satisfaction. ➡️ They also reported changing spending and saving patterns to fund medical care. https://buff.ly/4bx4Soo