Immune Deficiency Foundation’s Post

As September's end approaches, so does Asthma Peak Week—a critical time marked by a significant spike in asthma exacerbations and hospital visits. This period coincides with a confluence of allergens, changing weather, wildfires, and the return to school, creating a perfect storm for asthma sufferers. Impacts of Asthma Peak Week Emergency Room Visits and Hospitalizations: During Asthma Peak Week, there is an approximate 15-20% increase in asthma-related emergency room visits and hospital admissions compared to other times of the year. Pediatric Impact: Children are especially vulnerable during this period, with studies showing that pediatric hospital admissions for asthma may see increases of up to 25% during the month of September. Direct Costs: Annually, asthma costs Americans an estimated $50 billion in direct healthcare costs, with significant spikes during peak times. Indirect Costs: Indirect costs such as lost productivity from school and work absenteeism also spike during this period. Asthma is one of the leading causes of school absenteeism, accounting for over 13 million missed school days per year! Learn More > https://lnkd.in/eTEkm2FQ

The PRV program is hugely important for #ultrarare drug development. As a policy matter, it creates taxpayer neutral incentives for small biotechs like ours to invest in highly risky #ultrarare development initiatives. As a human rights matter, #ultrarare patient populations suffering from serious diseases with no approved therapies and few to no development initiatives on the horizon are most deserving of these incentives. This program is brilliant in that it creates incentives for big pharma to compensate small biotechs for taking the risk and initiative to trailblaze #ultrarare therapies. Joining EveryLife Foundation for Rare Diseases and Ultragenyx in applauding this initiative.

Quick guide: Immunodeficiency: How sick is too sick? – PaediatricFOAM https://lnkd.in/e-jUKy8y

𝗜𝘀 𝗶𝘁 𝘁𝗵𝗲 𝗲𝗻𝗱 𝗼𝗳 𝘁𝗵𝗲 𝘄𝗼𝗿𝗹𝗱 𝗳𝗼𝗿 𝗮 𝗰𝗵𝗶𝗹𝗱 𝗼𝗿 𝗳𝗿𝗶𝗲𝗻𝗱 𝗹𝗶𝘃𝗶𝗻𝗴 𝘄𝗶𝘁𝗵 𝘀𝗶𝗰𝗸𝗹𝗲 𝗰𝗲𝗹𝗹 𝗱𝗶𝘀𝗲𝗮𝘀𝗲? It was a quiet night shift. After setting up the IV infusions for my patients, I sat back at the nurses' station. But something tugged at my spirit, urging me to check the children's ward—again. - It was 11 PM. I found his father sitting quietly, watching his 10-year-old son, diagnosed with sickle cell disease from age 2, receiving his second blood transfusion. He didn’t look up as I approached. - “I’m here to check on him,” I said softly. “I’ll keep an eye on him. You should rest a little—you came back late from work today.” Still, he didn’t respond. - But then I saw it: silent tears running down his face. “Talk to me, Mr. Paul (name changed),” I urged. That’s when he broke down, crying even harder. I sat with him. And that's how I spent 4 hours: - Listening - Comforting - Educating - Encouraging - He finally found some peace. And even began to smile, with renewed hope. "No one has ever done this for me. Thank you Nurse Chioma. It is possible" "Yes, it is possible", I echoed back Till date, Mr Paul never forgets me anywhere he sees me. - September is Sickle Cell Awareness Month, a time to raise awareness about sickle cell disease and the challenges people living with this condition face every day. Let’s talk about lifestyle modifications for those living with sickle cell disease. Check the comments for more details on each point on the infographic (This is for informational purposes. It is always important to meet with your healthcare provider for tailored modifications that is good for you) - Save and Repost ♋ PS: Feel free to share your thoughts and experiences in the comments Happy Tuesday 🌹 #HealthCoach #SickleCellDisease #HealthyLiving #PreventiveHealth #busyprofessionals

Are you aware of the struggles patients with rare diseases face? From misdiagnoses to years-long waits for answers, the journey is often filled with uncertainties. In this article, Carole Drexel dives into how education is bridging the gap and offering hope. https://lnkd.in/gnNXYASr

A recent study presented at the ATS 2024 International Conference reveals a critical link between extreme heat and increased asthma hospital visits among children. The findings indicate that during heat waves, the odds of asthma-related hospital visits can increase by up to 19%, with prolonged heat waves doubling these odds. It’s vital to advise patients on preventive measures during extreme heat periods. Let's stay proactive in educating families about managing asthma in extreme heat conditions. Together, we can help reduce emergency visits and improve outcomes for our young asthma patients. Read more: https://lnkd.in/eZQQKYFb

Climate awareness and surveillance are key to rapid and successful pediatric asthma outcomes.

One in 17 people will be affected by a rare disease at some point in their lives, and patients with a rare disease often experience a long journey to getting a diagnosis and appropriate treatment. This Month, Medscape Education is making a renewed commitment to use clinician education to help shorten the diagnostic and treatment journey for the millions of people living with a rare disease. Read the article here to see what Medscape have in store for this year's Rare Disease Day: https://lnkd.in/ex9bJQr6 #RareDisease or #RareDiseases #LightUpForRare #DareToThinkRare #RareDiseaseAwareness #RareDiseaseDay

📣 Today is #WORDDay2024 ! World yOung Rheumatic Diseases Day raises the awareness and knowledge level of parents, doctors, primary practitioners, teachers, and the general public to help first and foremost in early diagnoses, and a quick referral to specialised paediatric rheumatologists.  It is the occasion to deep into the journeys of young people facing #RheumaticDiseases. Hear their stories of struggles, challenges, and successes ⬇ https://lnkd.in/dh-pGYW3

🏥 Respiratory disease is a leading cause of death in children under the age of 5, accounting for a staggering 25% of all pediatric hospitalizations each year. While remote monitoring solutions have shown promising results in reducing adult ER visits and hospitalizations, digital health tools specifically designed for children are lacking. 🌟 Recognizing this need, Gabi SmartCare built Pediarity™, a cutting-edge platform that combines a miniaturized monitoring bracelet with a cloud-based analytics system. This system provides healthcare professionals with personalized and predictive health assessments for their youngest patients. 🔍 Through pre-submission meetings with the FDA, Gabi Smartcare sought to understand the agency's requirements across different pediatric age groups, from neonates to children. As a Belgium-based company, they also learned the importance of conducting clinical testing directly in the U.S. to ensure acceptance of their real-world data. 🏆 The results? A remarkable achievement that is already making waves across the industry. Explore the full case study and discover how early FDA collaboration can help you navigate regulatory complexities: https://lnkd.in/enFFt4RF