Scottish Huntington's Association’s Post

I have been admiring the work that Danielle Drachmann does for the past few months. She was recently part of a hearing on rare disease with the European Parliament, advocating for patients with rare diseases. It was an absolute pleasure and an honor to interview Danielle on the podcast.  This was a packed interview! We talked about the impact of ketotic hypoglycemia on Danielle and her children, raising children with a strict diet, patient advocacy and building an economy of well-being in Europe. #hypoglycemia #ketotichypoglycemia #raredisease #europeanparliament #patientadvocacy #wellbeing

September is World Alzheimer’s Month—a time to raise awareness, challenge stigma, and support those affected by Alzheimer’s disease. At Veramazo, we understand the unique challenges that come with cognitive decline, and we’re here to offer support, compassion, and expert care. From personalized memory care services to ongoing advocacy and emotional support, we’re committed to helping individuals and their families navigate this journey with dignity and respect. Join us this month in spreading awareness and supporting the Alzheimer’s community. 💜 Learn more in our recent blog on senior memory care, where we dive deeper into what memory care is, who it’s for, and how it can make a difference: https://lnkd.in/e_tvtrTt

DO YOU KMOW? Every MAY 30th Organizations and communities around the world use this day to organize events such as walks, seminars, and fundraisers to support MS research and improve the quality of life for people affected by the disease. It’s also an opportunity to debunk myths and misconceptions surrounding MS and to promote understanding and empathy for those living with the condition. #multiplesclerosis #livingwithms

I have been admiring the work that Danielle Drachmann does for the past few months. She was recently part of a hearing on rare disease with the European Parliament, advocating for patients with rare diseases. It was an absolute pleasure and an honor to interview Danielle on the podcast. This was a packed interview! We talked about the impact of ketotic hypoglycemia on Danielle and her children, raising children with a strict diet, patient advocacy and building an economy of well-being in Europe. #hypoglycemia #ketotichypoglycemia #raredisease #europeanparliament #patientadvocacy #wellbeing

Thousands of Americans will receive a devastating kidney disease diagnosis this year – news that will forever change their life. But thankfully, there are family members and caregivers to lean on, and a supportive community of dedicated champions leading the way forward – everyday heroes doing all they can in the fight against kidney disease. That’s what #KidneyHeroesGivingDay is all about. Honor your hero: https://bit.ly/4dPSota Thanks to a group of generous, supporters, your first monthly gift will be matched dollar for dollar, up to $20,000 meaning your impact on lifechanging research, advocacy and treatment will be DOUBLED. We can’t bring an end to kidney disease in a single day, but every gift is a step forward and a step closer to the next lifechanging breakthrough. Show your support and honor your hero before midnight: https://bit.ly/4dPSota

Today is Global Niemann-Pick Awareness Day! 🩶 On this day, we come together to shine a light on Niemann-Pick Disease, especially Niemann-Pick Type C (NPC), a rare and life-altering condition. As we continue our journey with NPC, we're reminded of the strength, resilience, and love that unite families like ours. Raising awareness is key to finding better treatments and support for those affected. Let's spread the word and advocate for more research and understanding! Together, we can make a difference. 🩶 #NiemannPickAwareness #NPDawareness #RareDisease #Awareness #SilverRibbon #SilverLight

A few years ago we had the opportunity to sit down with rare advocate, Kelly Barendt. She began using her social media platform to help others going through challenges with their rare disease. Today, she's built an incredible online community, sharing her journey, raising awareness, and offering support to countless others along the way! Watch Kelly's full story at TheBalancingAct.com/Rare and see her featured in our guide: Navigating Your Rare Disease, linked in our bio! 🔗 #BehindTheMystery #RareDiseaseAdvocate #RareDiseaseAwareness #RareDiseaseCommunity #CureFA #FAawareness

🤔 Ever wondered about the impact of our work on the lives of kidney patients and their loved ones? From providing financial assistance to counselling support, we're helping to make life a little bit easier when it comes to living with chronic kidney disease (CKD). Don’t just take our word for it, check out our latest Impact Report here: https://lnkd.in/eaag-zqK

We are campaigning for change and we want to hear from you about what issues you want us to address first. Living by our motto 'inspired by our community' your input into the work we do is so important. We are looking at our next campaigning priorities and we want the input of the community to develop this. We want to get your view on the important issues that we should be campaigning on. This will help our work to influence decision-makers, including the government, to try and improve care and support for people affected by Huntington’s disease. 🔗 https://loom.ly/PAwN_MU

Following on from our inaugural National Drowning Report (July 2023), we are now able to share a Child Drowning Update for 2024, forming part of our Expert Lens Series. This new report highlights startling evidence from the National Child Mortality Database (NCMD) which shows that the number of child drowning deaths in England has doubled over the last four years. No child should drown. And we believe that it is vital to understand as much as possible about the contributing factors in order to raise awareness, grow understanding and ultimately reduce the number of young lives lost. The full report is available to download now from our website. https://lnkd.in/ep3J8mab