Rabin Martin’s Post

Earlier this week, the Global Commission to End the Diagnostic Odyssey for Children with Rare Disease re-launched with a clear plan for improving and accelerating diagnosis, a process that can be painfully long —5+ years for some children.   Sanofi is proud to serve as co-chair of the Global Commission alongside EURORDIS-Rare Diseases Europe and Takeda. Together, the Global Commission envisions a world where a clear path to a timely, accurate diagnosis exists for all children living with a rare disease.   The Global Commission is developing a framework and resource compendium of case studies that have been shown to successfully reduce the diagnostic odyssey. By publishing and sharing these stories of success, we hope to improve access to timely and accurate diagnoses for children around the world. Read the first iteration of the 2024 Framework for Action report: https://lnkd.in/dXF2N9tA   #raredisease

At AstraZeneca, it’s our mission to transform the lives of people affected by rare diseases.    That’s why we’re working to address the unmet needs of diseases like eosinophilic granulomatosis with polyangiitis (EGPA). We’re unravelling the significance of eosinophilic inflammation in the domain of inflammatory diseases. Our pioneering research has the potential to transform the standard of care and results for patients grappling with these complex conditions.    Learn more about our efforts: https://bit.ly/3T3R1Qc   #AAAAI24

If you are in Sydney this weekend, you still have a few days left to register for the Meso March this coming Sunday 16 June https://lnkd.in/gFtQf7pK Also while you're registering for the MM, like the Asbestos and Dust Diseases Research Institute (ADDRI) LinkedIn page and get important information about the work that we do to support #asbestos and #silica dust diseases patients and their families. #mesothelioma #asbestosrelateddiseases #silicosis #dustdiseases

WORLD MENINGITIS DAY 💛💜💙 Today, we’re flying the Meningitis Flag. A symbol for the community, representing the hope in defeating this disease. Theo Curin, para-athlete, shares his experience and how his community was the most important thing in overcoming meningitis. Join us this World Meningitis Day and fly the Meningitis Flag! Read more from Brian Coane 👉 https://lnkd.in/e_5t3umY   #DefeatMeningitis | #MeningitisFlag| #WorldMeningitisDay Sanofi, Meningitis Research Foundation, Confederation of Meningitis Organisations (CoMO), a part of Meningitis Research Foundation

Over 100 new gene-disease relationships are characterized annually. Since launching exome testing in 2011, Ambry has been committed to proactive reanalysis of exome results each time there is a new gene-disease association with our Patient for Life program. As a result, we’ve been able to provide new answers for 1 in 20 patients who initially had negative or inconclusive results. The Ambry Patient for Life program is one way we demonstrate our commitment to people with rare disease. Join us next month as we help spread awareness of Rare Disease Day, happening February 29! #PatientforLife #RareDiseaseDay #genetictesting #exome

We are excited to announce that we have published an article on the topic of “Curcumin-based nanoformulations as an emerging therapeutic strategy for inflammatory lung diseases”. Our research explores the potential of curcumin-based nanoformulations in treating inflammatory lung diseases and provides insights into the latest developments in this field. Check it out and let us know your thoughts! #curcumin #nanoformulations #inflammatorylungdiseases

November marks Alpha-1 Antitrypsin Deficiency (AATD) Awareness Month. AATD is a rare genetic condition that can lead to severe lung and liver diseases. It's often undiagnosed, but early detection and intervention may assist in managing the symptoms. At Kamada, we are committed to improving Alpha-1 patients' lives; Together with leading clinicians and patient associations, we work tirelessly on innovative treatments for those who need them most. This year's Alpha-1 awareness month theme is "Make Your Move For Alpha-1". Whether it's raising awareness on social media, fundraising for the Alpha-1 Virtual Walk, or contributing to the Alpha-1 Research Registry, every action counts and benefits the Alpha-1 community. So, Let's "make a move" by joining forces to raise awareness for AATD. Together, we can provide hope and improve the lives of those affected by this condition. To learn more about Alpha-1 Awareness Month click (https://lnkd.in/ee8tSy4w) #Alpha1AntitrypsinDeficiency #AwarenessMonth #ResearchMatters #MakeYourMoveForAlpha1

Did you know that 72% of rare diseases are genetic, and 70% of them begin in childhood? With over 7000 rare diseases currently identified and such a wide range of data, it's crucial to have access to a high-quality disease registry. These registries play a vital role in accelerating the clinical trial process. At Carexso, we've been instrumental in establishing comprehensive rare disease registries. These serve as centralized repositories of credible information, facilitating faster treatments and the development of orphan drugs. Our recent collaboration with Uncommon Cures, a leading rare disease clinical trial company in the United States, represents another significant step forward. Together, we aim to enhance clinical trials in the Middle East, bringing hope and solutions to those affected by rare diseases. #RareDiseaseDay #Carexso #UncommonCures #ClinicalTrials #RareDiseases

“At AstraZeneca, we are continuing to follow the science to further unlock our understanding of complex immune-driven diseases like SLE. If we can recognize and address the underlying drivers of disease, we can tackle key areas of unmet need that remain. On #WorldLupusDay let’s shed light on the urgent need for higher standards of lupus care. Together, we can take action to advance the existing standard of care and help those with lupus lead fuller lives. #MakeLupusVisible #UnlockingLupus #WorldLupusDay #AstraZenecaEgypt

“At AstraZeneca, we are continuing to follow the science to further unlock our understanding of complex immune-driven diseases like SLE. If we can recognize and address the underlying drivers of disease, we can tackle key areas of unmet need that remain. On #WorldLupusDay let’s shed light on the urgent need for higher standards of lupus care. Together, we can take action to advance the existing standard of care and help those with lupus lead fuller lives. #MakeLupusVisible #UnlockingLupus #WorldLupusDay #AstraZenecaEgypt