Muscular Dystrophy Association’s Post

CALLING ALL #RAREDISEASE #ADVOCATES! Join us at the National Organization for Rare Disorders *next Wednesday, July 24, 2024 from 2-2.45 pm ET* to learn how YOU can make a difference for children and families with rare diseases! The Rare Pediatric Disease Priority Review Voucher (RPD PRV) program creates vital incentives for the development of life-altering treatments for children. The program has helped advance safe and effective treatment options for nearly 40 rare disease states—but it is set to expire September 30, 2024. Legislation was introduced in Congress to reauthorize this important program. Because this legislation is so significant for the rare disease community, NORD will host a webinar to explain how the program works, it’s impact on patients, and how YOU can engage to help get this program reauthorized before it expires. Register for this free, 45-minute webinar, that will take place July 24 at 2:00pm. This webinar is perfect for advocates, patients, caregivers, students and the public. Link to Webinar Registration: https://lnkd.in/ev7WBDvy

Good insights here to consider.

Let's talk about constipation! 💩 The National Institutes of Health (NIH) reports that nearly one out of every 20 pediatric doctor visits are because of constipation. That means it's something as parents we should be aware of and can feel confident talking to our child's pediatrician about. Here are some prevention tips and signs for when to see a doctor: https://bit.ly/4aiZq8J

Heart Matters Looking into Long-Term Cardiovascular Impacts of COVID-19 - ReachMD Hosted by Matthew Sorrentino, MD https://lnkd.in/gPV8DYhM Guest: William W. Li, MD Some patients who recover from COVID-19 may continue to experience long-term cardiovascular complications. So what symptoms should we be looking out for? Joining Dr. Matthew Sorrentino to discuss the long-term cardiovascular impacts of COVID-19 is Dr. William Li. Posted here by My Long Covid Advocacy

🙌Making the transition from children’s to adult palliative care less daunting. “Strong bonds and a sense of security and comfort can be what many families fear losing during this change, so this tool has been designed to get that on the table and develop a smooth transition plan so that treatment, care, and relationships are supported," says Camilla Rowland, CEO, PCA. More about this new resource for paediatric palliative care ➡️ https://ow.ly/8W4R50SFJ0P

Here's the most important sentence from the International Consensus Criteria for Pediatric Sepsis and Septic Shock, JAMA, January 21, 2024: “SIRS should no longer be used to diagnose sepsis in children, and because any life-threatening condition is severe, the term severe sepsis is redundant.” And a little child shall lead them... Sepsis is Sepsis-3.

Diagnosing a sick child can be a challenge. Pediatric patients can’t always tell you their symptoms. The BIOFIRE® Panels utilize a syndromic approach—simultaneously testing for different pathogens that can cause similar symptoms. With just two minutes hands-on time and about an hour turnaround time, syndromic testing can significantly reduce the time to actionable results compared to standard of care in pediatric hospitals. ⌛ In about an hour, you’ll have the actionable results you need to help put your patients, and their concerned caregivers, at ease. Learn more: https://lnkd.in/egMWT7ND #WeArebioMérieux

According to the CDC, about 40,000 infants a year are born with congenital heart defects (CHDs) in the United States. Our pediatric advanced practice providers work in collaboration with our partners at Children's Health to help children with heart conditions lead happier, healthier lives. Make a difference with UTSW. https://bit.ly/4goMf9s #WorldHeartDay

In our recent virtual roundtable discussion, Dr. Flyer shed light on the stark reality of the US' shortcomings in pediatric emergency readiness - in relation to the Covid-19 pandemic. According to Dr. Flyer, if the virus had directly impacted children, we could have lost a significant portion of a generation due to overwhelming mortality rates directly linked to these shortcomings. You can help us in our fight to make a system-wide change and prevent pediatric deaths by signing our petition here: https://lnkd.in/e2KdqAdP

European Parliament Recognizes Essential Tremor as Official Disease in Ground-Breaking Declaration The European Parliament, in collaboration with Insightec and patient advocacy groups, has taken a historic step forward in the healthcare realm by signing a Joint Declaration to recognize essential tremor as a disease officially. This monumental move promises to enhance the lives of millions who suffer from the most common movement disorder worldwide, affecting an estimated 54 million people https://lnkd.in/e8uVQ3Rc