Viljem Julijan Association for Children with Rare Diseases’ Post

I need everyone's help. My granddaughter has severe NKH. We are getting oh so close to trial meds to help her, but need funding. Once the medication is ready, we have to spend several weeks at the Colorado Children's Hospital for treatment & see how it's tolerated. Please, please help us, and help save my granddaughter and many other kids just like her. Click the link and donate or if you can't, please share. https://gofund.me/79cda309 🔴 What is NKH ❓ ✅ Non-Ketotic Hyperglycinemia 🔘 FACTS 🔘 - There are less than 500 known cases in the WORLD. - There are different forms; mild, attenuated, and severe. - Most commonly, children are severely affected. - It is a genetic disease that currently has NO CURE. - NKH causes severe developmental delay, seizures, hypotonia & other issues. - Strange thing to look for if you feel your newborn may be affected: HICCUPS! Sounds crazy, but it's true. - The only funding for the small amount of research that there is, comes through the NKH families. - These children are fighters. - The NKH network of families will NEVER give up on fighting for a cure. We are one. Alone we are rare, but together we are strong. We will do our BEST to spread awareness about NKH in hopes to one day, find a cure. I challenge YOU to share this post. Teach someone about NKH! 🐝 #TeamBraylynn #braylynnsbattlewithnkh #nonketotichyperglycinemia #bumblebee #nkh #raredisease

TODAY is WORD DAY! (World yOung Rheumatic Diseases day) It is the most important date in the calendar for raising awareness that children and young people get rheumatic diseases too. Juvenile Idiopathic Arthritis (JIA) is the biggest rheumatic disease affecting children and young people. In the UK, there are an estimated 15,000 children under the age of 16 living with the condition. Around 1,000 children are diagnosed each year in the UK – that’s around 20 families a week that will hear the news that their child has arthritis. Some will have had to wait a long time for that diagnosis due to the lack of awareness that children can get arthritis too. Together we can change that by raising awareness of childhood arthritis this WORD day. By liking, commenting, and most importantly, sharing, our social posts today you can help raise that vital awareness of childhood rheumatic conditions such as JIA. Because awareness changes lives. Find out more at www.jarproject.org/word And don't miss this evening's WORD day webinar - you can sign up at www.wordday.org #ThinkJIA #AwarenessIsEverything #WORDDay #WORDDay2024 #ChildrenGetArthritisToo #ArthritisAwareness #JIA #JuvenileArthritis #JuvenileIdiopathicArthritis #JuvenileArthritisResearch #Kipo #Arthritis #ChildhoodArthritis #ChronicIllness #AutoimmuneDisease #JARProject #JIAWarrior #ArthritisAwareness #charity #CharitableCause #NonProfit #Donate #Support #causes #KidsWithArthritis #KidsGetArthritisToo #DontBeAloneWithJIA #InstaCharity #RaiseAwareness  #PaediatricRheumatology

🇮🇳 Today is World Rare Disease Day. Ataxia telangiectasia (A-T) is a rare, genetic and neurodegenerative disease that still has no cure or treatment. It causes progressive physical disability, immunodeficiency, severe respiratory problems and increased incidence of cancer. In each country we have few people affected by A-T, but together there are thousands around the world. For this reason, in 2020 we founded the A-T Global Alliance with charities from other countries, to fight together for research and share concerns: - For all the A-T children who still walk - For all those A-T patients who already use wheelchair - For all those who have already passed away - For those who are not yet diagnosed Could you help us? Donate at https://lnkd.in/gmYpD7xK Please share this post. #ataxiatelangiectasia #ATAlliance #AtaxiaIndia #AtaxiaIndia #aefat #rarediseaseday #rarediseaseday2024 aefat Ataxia-Telangiectasia A-T Society BrAshA-T Ataxia-Telangiectasia @at-childrensproject @at_europe @atleyasam

The season is upon us! Earlier today, my colleague John Korede Akinola and I were at Lagos Traffic Radio, the first of many media tours we plan to have as we begin to commemorate World Parkinson's Day on April 11, 2024, and bring awareness and understanding of Parkinson's disease to many people in Nigeria. Parkinson's disease (PD) is a neurodegenerative disorder that affects millions globally, and it's crucial to raise awareness about its impact. We discussed the symptoms, the diagnosis, and the amazing work being done at the Adewunmi Desalu Parkison's Center. Join us in this fight! Here's how you can help: 1. Educate yourself: Learn about PD and share your knowledge with others. 2. Support organizations: Donate or volunteer your time to Adewunmi Desalu Parkinson's Foundation Trust me, we do a lot of great work at the foundation, and we need your support. 3. Spread awareness: Share information on social media using hashtags like, #WorldParkinsonsDay #PDinNigeria #Parkinsonsawareness Together, let's shine a light on Parkinson's and create a future with better treatments and a potential cure. #ParkinsonsDisease #Nigeria #HealthAwareness #NonprofitInNigeria #NonprofitLeadership #SocialImpact #Support #Awareness #WorldPDDay

 On this #RareDiseaseDay, let's unite to raise awareness and support those affected by rare diseases like Spinal Muscular Atrophy (SMA). Did you know that there are about 7000 known rare diseases, affecting around 8% of the world’s population, with 75% of patients being children?   Let's Care for the Rare! S. Shathvika is suffering from Spinal Muscular Atrophy and needs your support. Please donate wholeheartedly to make a difference in her life. An initiative of the Ministry of Health & Family Welfare, Govt. of India. Visit https://lnkd.in/deQu5djJ to contribute. #RareDisease #Donate #Support  Despite the challenges, there's hope. Over the last two decades, researchers have made incredible advancements in rare disease therapies, offering new hope to those who previously had none.  But awareness and support remain critical. Many doctors lack the necessary training and awareness to diagnose and treat rare diseases effectively. Early diagnosis is often hindered by a lack of awareness among primary care physicians and insufficient screening and diagnostic facilities.  Let's join hands to ensure that Children like S. Shathvika receive the care and support they need. Together, we can make a difference. Share this post to spread awareness and show your support. #TheArogyaSangamFoundation #HealthForAll #showyourstripes

For those already #LivingWithPI, Gary’s story may sound all too familiar. When Gary was undiagnosed, he underwent frequent hospital visits and experienced recurring infections, and even felt tired after washing his hair. After a couple years of various doctor visits, and efforts to seek answers, Gary finally received an answer with his diagnosis of PI. These days, he feels better with treatment and can spend more quality time with his grandchildren. Will you support the Immune Deficiency Foundation and change lives to help individuals like Gary reach a diagnosis and subsequent treatment? Donate to make an impact this #PIAwarenessMonth: https://bit.ly/4cBtygO

Project Scleroderma is the name of the organization I founded 13 years ago in honor of my mom who lost her life to an autoimmune disease called scleroderma. Today is Rare Disease Day. On this day it is important that we shed light on the fact that scleroderma is a rare disease and all those who suffer from this illness deserve our care & support not just today, but every day. It is crucial that we raise awareness and support for the scleroderma community in order to continue to advance treatments and get one step closer to a cure. It is equally as important that we pay attention to and educate ourselves on all the illnesses or conditions that are considered rare. Our attention and support are vital in order to save lives and advance research. Today is a day to focus on these rare causes, educate ourselves and support in any way we can. #scleroderma #sclerodermaawareness #awareness #raredisease #rarediseaseday #support #community #nonprofit #rarediseaseday2024 National Organization for Rare Disorders (NORD) at NCSU

"Little drops of water make a mighty ocean" As well as a little drop of kindness can save a life!! What happens when poverty and disease collide? <<<Yes, Their only hope is fundraising Here is an India's first heart patient-led NGO Heart Health India Foundation (HHIF) started by an heart attack survivor!! Ram Khandelwal, who survived a major heart attack at just 33 while working at an MNC. Diagnosed with acute myocardial infarction and undergoing two angioplasties in 15 days, Ram founded HHIF to ensure others don't face the same ordeal without support. Heart attacks are the leading cause of death worldwide, with nearly 5 million incidents annually in India alone. Alarmingly, 80% of these are preventable, and 40% of adults are at risk. Heart disease affects everyone, regardless of age, gender, or socioeconomic status. Join the fight against heart disease - Donate ♥️ To read more and donate, kindly visit https://lnkd.in/dKSQF5qb If this cause makes sense, kindly support as much you can to be a part of this mission ! PS : what do you think about donating to NGOs? #fightagainstheartdisease #awarness #donate #NGO #support #hearthealth #HHIF

#ThyroidAwarenessMonth is the perfect time of the year to turn attention to a small but mighty gland in the human body: the #thyroid. Let's spread awareness about thyroid health and the importance of early detection. Whether it's #hypothyroidism or #hyperthyroidism, understanding the symptoms and seeking medical attention can make a significant difference. Let's prioritize our thyroid health and encourage others to do the same! #WorkingForABetterTomorrow! To Support the Cause ,Kindly Donate by using the Secure Payment Link:- https://lnkd.in/gTgC6cB #ThyroidAwareness #HealthMatters #ThyroidHealth #KnowYourThyroid #HealthAwareness #JanuaryHealth #thyroidproblems #thyroiddisease #thyroidweightloss #thyroidhealing #thyroidwarrior #thyroidcancer #thyroiddiet #thyroiddiseasesupport

🧡 **What is Lou Gehrig Day?** 🧡 Lou Gehrig Day is a moment for us to remember and honor the "Iron Horse," Lou Gehrig, whose incredible career was tragically cut short by ALS. It's also an opportunity to raise awareness about this devastating disease. 🧡 **Why ALS Awareness Matters** 🧡 ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. There is no cure, but awareness and research can make a difference in the lives of those battling this disease. 🧡 **How Can You Help?** 🧡 - **Learn:** Educate yourself about ALS. Understanding the disease is the first step in supporting those affected by it. - **Donate:** Consider contributing to ALS research and support organizations. - **Advocate:** Raise your voice to support policies and funding that aid ALS research and care. Let's use this day not only to remember a baseball legend but to also make a positive impact in the fight against ALS. Together, we can work towards a world without ALS. 💪⚾ #LouGehrigDay #EndALS #ALSawareness