Mended Little Hearts National Organization’s Post

Early diagnosis and treatments for familial hypercholesterolemia (FH) is so important! Join us for a webinar designed for caregivers and people with FH to learn about the latest treatment options: https://brnw.ch/21wDQUr #FH #EarlyDiagnosis

Behind every #diagnosis of a #raredisease lies a unique individual, often struggling in silence with #symptoms that defy conventional understanding. By seeking out these #patients, #HCPs and caregivers affirm the value of every life, committing to provide the best care and support possible. Increasing #DiseaseAwareness is one strategy to find more #patients, contact me how you can get more patients on therapy.

Discover the stark disconnect between physician and caregiver-reported symptom frequencies for individuals living with #AS & #SYNGAP1. Our latest blog post sheds light on the crucial significance of symptom reporting in the early diagnosis of rare conditions. Don't miss miss it: https://hubs.li/Q02hVPd30 #angelmansyndrome #syngap1 #childhoodseizuredisorders #raredisease #specialtydisease

We encourage you to let your newborn undergo screening. Screening is crucial for early detection, diagnosis, and treatment that will help prevent certain complications including disability or even death. #PlanoTX #Preschool #NewbornScreening #Prevention #Treatment

Early diagnosis of #JuvenileArthritis can prevent kids from feeling different from their more active peers. During recess, children with juvenile arthritis often watch from the sidelines, unable to join in the fun. Let’s ensure every child can play and laugh with their friends without pain.  #LetKidsBeKids #VijayaDiagnosticCentre #ArthritisAwareness #ArthritisCare #HealthCare #JuvenileArthritisAwarenessMonth #JuvenileArthritisAwarenessMonth2024

I thought that i missed the day to post about this but, as i read, it's from 12th till 19th, so just in time :) For those of you, who don't know epilepsy is one of the most common and disabling neurologic conditions, yet we have an incomplete understanding of the detailed pathophysiology and, thus, treatment rationale for much of epilepsy. A “seizure” is a paroxysmal alteration of neurologic function caused by the excessive, hypersynchronous discharge of neurons in the brain. “Epileptic seizure” is used to distinguish a seizure caused by abnormal neuronal firing from a nonepileptic event, such as a psychogenic seizure. “Epilepsy” is the condition of recurrent, unprovoked seizures. Epilepsy has numerous causes, each reflecting underlying brain dysfunction A seizure provoked by a reversible insult (e.g., fever, hypoglycemia) does not fall under the definition of epilepsy because it is a short-lived secondary condition, not a chronic state. Epilepsy is one of the most common neurologic conditions, with an incidence of approximately 50 new cases per year per 100,000 population. There are many types of epilepsy Why people with epilepsy need support? People with epilepsy are frequently in fear of having a seizure and this affects their social relations, self-confidence, and academic success, and thus leads to making fewer friends, and more often developing anti-social behaviour. #epilepsyawareness #epilepsysupport #epilepsystrong

#JuvenileArthritis makes kids feel older than their years, robbing them of carefree moments. Early diagnosis is key to preventing long-term damage and preserving the joys of childhood. This Juvenile #ArthritisAwareness Month, let's help every child enjoy a vibrant, active life #LetKidsBeKids #VijayaDiagnosticCentre #JuvenileArthritis #ArthritisAwarenessMonth #ArthritisAwarenessMonth2024 #ArthritisCare #HealthCare

#SmallCharityWeek Greater awareness aids diagnosis & treatment. Help us build awareness and support among GPs & others involved in the care of those diagnosed with #NF (#NF1, #NF2 & #SWN), by providing them with the necessary education. iNForm your #GP: https://bit.ly/32waaPJ #MakeNFVisible #NFAwareness #NFSupport #MedicalSupport @NCVO

Did you know there is a virtual group program called SMART that your healthcare provider can offer to help adults with #epilepsy? Consider asking your doctor where it’s available especially if you have been recently diagnosed. Learn more: https://ow.ly/bupL50QZ8LM #epilepsysupport

Did you know there is a virtual group program called SMART that your healthcare provider can offer to help adults with #epilepsy? Consider asking your doctor where it’s available especially if you have been recently diagnosed. Learn more: https://ow.ly/bupL50QZ8LM #epilepsysupport