Congenital Hyperinsulinism International’s Post

On this #RareDiseaseDay, it's crucial to recognise that adopting a holistic approach can combat Europe's leading cause of mortality. What steps can be taken? Prioritising an EU #cardiovascular health plan before the #EUelections2024 holds promise for effecting tangible improvements.

ARVC is one of these rare heart diseases. In the patient community of ARVC-Selbsthilfe, it takes about 7 years until the correct diagnosis is made. That's why we need more genetic testing and autopsy and genetic testing after sudden cardiac death (SCD) in the young to reveal genetic diseases and prevent SCD in other family members. #RareDiseaseDay #suddencardiacdeath #votehealth2024

There are more than 6,000 known #RareDiseases, and collectively rare cardiovascular diseases #CVD impact approx. 5% of the world's population. The sad truth about rare diseases is that they are often diagnosed late due to a lack of general awareness and medical knowledge of these conditions. On this #RareDiseaseDay, let us tell you about a few rare #CVD conditions. Read more below (LINK in the comments👇 ). We call on policymakers to #VoteHealth2024 in this year's #EUelection2024. Share this post, for this knowledge may save your or someone else's life. #CheckYourNumbers

🌟 GERD Awareness Week at K Healthcare Hospital 🌟 Did you know that gastroesophageal reflux disease (GERD) affects millions of people worldwide? This GERD Awareness Week , we're shining a light on the importance of recognizing symptoms, understanding the risks, and seeking early treatment to manage this chronic condition. 🔹 Symptoms of GERD include frequent heartburn, regurgitation, chest pain, difficulty swallowing, and more. Long-term effects can lead to serious complications like esophageal damage or even cancer, but with the right care, GERD is manageable! At K Healthcare Hospital, we’re committed to providing expert care, education, and support for those living with GERD. If you're experiencing symptoms or want to learn more, our specialists are here to help. #GERDAwarenessWeek #HealthMatters #KHealthcare #DigestiveHealth #HeartburnRelief #HealthyLiving

Tomorrow is World Amyloidosis Day 🌍 Amyloid Light Chain (AL) Amyloidosis, a type of amyloidosis, is a rare but serious condition that can affect the heart and other vital parts of the body. If left undetected, the accumulation of abnormal proteins can lead to severe organ and tissue damage. Early diagnosis and treatment are crucial to managing this disease effectively. At Mended Hearts Europe, we offer a comprehensive educational resource to support patients and caregivers, covering everything from symptoms and diagnosis to treatment options. Empowering individuals with the right knowledge is essential for better disease management. Learn more and access our resources 👇 https://ow.ly/gLQ250TSHtL #WorldAmyloidosisDay #ALAmyloidosis #HeartHealth #PatientSupport #RareDiseases Amyloidosis Alliance AmyBel - Amyloidosis Association Belgium

Imagine facing a chronic disease that can inflict recurrent anemia, extreme fatigue and weakness, and episodes of relentless pain so severe that you require emergency care. Now compound that with the emotional and psychosocial distress of others not recognizing or relating to the severity of your symptoms because they do not understand what it feels like to have stiffened, sickle-shaped red blood cells get stuck moving through your vessels, blocking blood flow to your chest, abdomen, and joints. This is the kind of lived experience shared at SHN’s Sickle Cell Disease Community Town Hall last fall, which has helped inform the expansion of sickle cell disease services. Working with patients and family members, SHN identified new opportunities to address the challenges this patient community faces, particularly for patients who arrive to the Emergency Department with sickle cell symptoms. Find out what SHN is doing to make sickle cell disease care better: https://lnkd.in/gtCbV3Hq Image features participants from SHN Sickle Cell Town Hall last fall. #SickleCellAwarenessMonth #SickleCellDisease #SHNcares #LoveScarborough

The few things I learnt in this journey towards a successful IND: 1. Therapeutic development starts and ends with PATIENTS 2. STRONG PROJECT MANAGEMENT and TEAM SCIENCE is instrumental in successful translation of drug development projects I am really excited about this milestone and hoping it can help the patients in need. #raredisease #drugdevelopment #IND

Women are being underdiagnosed and under-treated when it comes to heart disease. They’re even less likely to be treated promptly and appropriately for the main CVD risk factors, including high cholesterol and high blood pressure, according to a Cardiology at BMJ report. Its authors say it’s time for a new approach to preventing needless deaths, including women’s heart champions and heart hubs and raising awareness that heart disease is one of the leading killers of women in Australia and not just a man's disease: https://lnkd.in/dpBz6gyc #HeartDisease #WomensHeartDisease

It’s day 3 of #ESCCongress and #HCPs have been actively discussing various diseases online. 👉So far, heart failure has been the most talked-about condition, with over 500 HCPs engaging in discussions. 👉The #FINEARTS-HF trial has been well received, with HCPs emphasizing the #efficacy of finerenone in reducing cardiovascular death and #heartfailure. 👉81 HCPs also discussed semaglutide's significant benefits in patients with #HFpEF. 👉 Follow us to stay up-to-date with live HCP data throughout #ESC2024!

## Don't Just Look for Coughs: Fight TB in All Its Forms! #WorldTBDay Today, on World TB Day, we raise awareness not just about pulmonary TB (affecting the lungs), but all forms of this preventable and treatable disease. TB can affect almost any part of the body! This includes the lymph nodes, spine, brain, and even the bones. Symptoms can vary depending on the location, but here are some general signs to watch for: * Fever and chills * Night sweats * Unexplained weight loss * Fatigue * Loss of appetite If you experience any of these symptoms, get tested! Early diagnosis and treatment are crucial for successful recovery and preventing the spread of TB. Together, let's break the silence and stigma around TB. Share this post to raise awareness about extrapulmonary TB and encourage everyone to get tested if they have concerns! #EndTB