Beyond Celiac’s Post

Did you know that only 14% of parents with children under 18 understand that many kids with celiac disease do not have stomach issues? Celiac disease has over 250 symptoms, and they very greatly from person to person. Check out our Symptoms Checklist resource on our website. https://hubs.li/Q02ChPKG0 To gain a better understanding of the knowledge and perceptions that Americans have about pediatric celiac disease, Beyond Celiac commissioned The Harris Poll to conduct a 2024 national benchmarking survey. The Harris Poll on behalf of Beyond Celiac was conducted nationwide January 9-11, 2024, among 2,074 U.S. adults ages 18 and older. https://hubs.li/Q02ChP840 💚 #celiac #celiacdisease #autoimmune #autoimmunedisease #gluten #glutenfree #glutenfreeliving #chronicillness #celiacresearch #celiacawareness

10 AM Eastern US Time Meeting ID: 833 0504 2575 Passcode: 842548 Join Zoom Meeting  https://lnkd.in/e8dimVrB   The Post-Polio Syndrome Group Presents Trust, Abandonment, Attachment Life Challenges After Early Hospitalization for Polio Karla Stromberger Polio. Pediatric PT IMAGE DESCRIPTION The poster's background is different shades of blue. A faint image of a doctor looking over a patient's records is in the background. In the middle is a photo of the speaker.

10 AM Eastern US Time Meeting ID: 833 0504 2575 Passcode: 842548 Join Zoom Meeting  https://lnkd.in/e8dimVrB   The Post-Polio Syndrome Group Presents Trust, Abandonment, Attachment Life Challenges After Early Hospitalization for Polio Karla Stromberger Polio. Pediatric PT IMAGE DESCRIPTION The poster's background is different shades of blue. A faint image of a doctor looking over a patient's records is in the background. In the middle is a photo of the speaker.

10 AM Eastern US Time Meeting ID: 833 0504 2575 Passcode: 842548 Join Zoom Meeting https://lnkd.in/eHhhwptG The Post-Polio Syndrome Group Presents Trust, Abandonment, Attachment Life Challenges After Early Hospitalization for Polio Karla Stromberger Polio. Pediatric PT IMAGE DESCRIPTION The poster's background is different shades of blue. A faint image of a doctor looking over a patient's records is in the background. In the middle is a photo of the speaker.

CureLGMD2i Foundation has signed on with EveryLife Foundation for Rare Diseases, National Organization for Rare Disorders, Muscular Dystrophy Association and over 200 other patient advocacy organizations in a letter to Congress calling for the passage of a long-term extension of the Rare Pediatric Disease Priority Review Voucher Program before it expires on December 20th. The Creating Hope Reauthorization Act of 2024 will extend the Rare Pediatric Priority Review Voucher (#PRV) Program, an initiative that has spurred the development of more than fifty new treatments for rare diseases since its launch in 2012. The PRV is a critical lifeline for millions of Americans affected by pediatric rare diseases waiting for the hope and relief that new treatment options can provide. Please take a moment and take action today through the link below and urge your member of congress to extend this life-changing legislation for rare diseases like the #LGMDs. https://lnkd.in/e9r24nbe

🧠 New discovery: Researchers uncover cause of severe inflammatory syndrome in children with COVID-19 Researchers (Nicolai Jacob Wewer Albrechtsen, Ulrikka Nygaard) have identified the cause behind a severe inflammatory syndrome impacting children who contract COVID-19. This breakthrough offers new hope for treatment and prevention strategies. Learn more about this important research on #COVID19 and its effects on children in our latest article here: https://lnkd.in/dENM2KmF #sciencenewsdk #COVID19research #inflammation #childhealth #pandemicresearch #medicalbreakthrough #researchinnovation #NovoNordiskFoundation

𝗠𝘆 𝗚𝗹𝘂𝘁𝗲𝗻 𝗖𝗼𝗻𝘁𝗮𝗺𝗶𝗻𝗮𝘁𝗲𝗱 𝗝𝗼𝘂𝗿𝗻𝗲𝘆 Have you ever been at a restaurant and thought you asked all the right questions, but then you start digging into your meal only for a staff member to come out and mention that the food actually contains gluten? 😱 This has happened to me more times than I'd like to admit—especially when I was first diagnosed with celiac disease. Even with plenty of education, I still ran into issues more often than I wanted. That's when I realized the need for more widespread education on celiac disease. This realization fueled my passion for digestive health, with a special focus on celiac disease. Over the years, my mission has evolved to wanting to do more and reach more people. That’s why I’m now developing courses to better serve our community and raise awareness, especially for kids who are newly diagnosed or have been living with celiac disease. Celiac disease can be incredibly impactful for anyone diagnosed. When it comes to children, a celiac diagnosis can significantly affect their growth and development if not dealt with properly, potentially leading to multiple health issues throughout their lives. By providing the right tools and knowledge, we can help kids not only avoid these complications but also live healthier, happier lives. Follow and stay tuned for more updates on my upcoming courses! Together, we can build a strong foundation for anyone navigating life with celiac disease. #CeliacDiseaseEducation #GlutenFreeLiving #DigestiveHealth #CeliacAwareness #HealthyKids #GlutenFreeLife #CeliacSupport #CeliacCommunity #HealthJourney

🐾 CATS AND CYSTIC FIBROSIS AWARENESS MONTH 🐾 Did you know that May was Cystic Fibrosis Awareness Month? As we continue to shed light on this rare disease that affects the lungs, let's take a moment to explore the intriguing question: Can cats suffer from cystic fibrosis too? Cystic fibrosis (CF) is a genetic disorder that primarily affects the respiratory and digestive systems in humans. It's caused by a faulty gene that produces thick, sticky mucus, leading to various complications. While cystic fibrosis is primarily seen in humans, it's important to note that it is not a condition that affects our feline companions. Cats do not naturally develop cystic fibrosis like humans do, as the genetic mutation responsible for CF is specific to humans. However, just like humans, cats can experience respiratory issues, lung infections, and other health concerns. It's crucial for cat owners to be aware of these potential issues and seek veterinary care if their feline friends show any signs of respiratory distress. As we raise awareness for cystic fibrosis in May, let's not forget about our furry friends. Cats may not be directly affected by CF, but they still deserve our love, care, and attention when it comes to their respiratory health. Together, let's support those living with cystic fibrosis, their families, and the incredible researchers who are tirelessly working towards finding a cure. By spreading awareness and supporting CF research, we can make a difference in the lives of those affected by this challenging condition. #CysticFibrosisAwarenessMonth #CFAwareness #CFWarrior #FightCF #CureCF #CFCommunity #CFResearch #CFAware #CFAwarenessMonth #65Roses #LungHealth #RareDisease #CysticFibrosisFighter #CFStrength #LivingWithCF Let's come together and make a positive impact during Cystic Fibrosis Awareness Month. Together, we can raise awareness, provide support, and foster hope for a brighter future.

Globally, 80% of teen smokers take up smoking before age 13. With smoking causing 85% of lung cancer cases, this presents a major pediatric health challenge. This World Lung Cancer Day, we're focused on our 19-country initiative for tobacco control and cessation with our partner, the Centers for Disease Control and Prevention Office on Smoking and Health, Global Tobacco Control Branch. Together with pediatric societies across Europe and Central Asia, Southeast Asia, and Africa, we are establishing learning collaboratives where pediatricians meet to develop awareness and advocacy initiatives. The learning collaboratives have launched pediatrician education programs and public service campaigns to support tobacco control in each region. As we continue this work, we aim to create a smoking- and cancer-free future for children and adolescents. #WorldLungCancerDay #lungcancer #globalhealth

#raredisease #drugdevelopment is hard - and doubly so for #pediatric #rarediseases - those #rare diseases that primarily affect children, and often claim their lives far too early! That is why #incentives like the #rarepediatricdisease #priorityreviewvoucher or #PRV program are so important. We simply *CANNOT let this program expire on September 30!* Too many lives depend on it.