Scottish Huntington's Association’s Post

Do you have ten minutes? We want to hear from you about what issues you want us to address first 👇 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. Our survey is open for people affected by Huntington's disease, aged 18 and above. This includes people who support someone who is living with, or at risk, of Huntington's disease. 🔗Find the survey link here: https://loom.ly/PAwN_MU

Over the next few weeks, we're going to do a series called "Throwback Thursdays". We'll use this time to let you know what we've accomplished as a community since KrabbeConnect was incorporated on February 5th, 2018. First Up! Project: Disease Burden and Treatment Considerations in Krabbe disease: The Caregiver Perspective Goal of Project: Spread awareness and insights to help others understand the burden of navigating treatment for an individual diagnosed with Krabbe disease Results: See poster photo below Cost of Project: $22,537.54 **Note: The project's cost does not include KrabbeConnect's time and resources in presenting the poster at conferences.

Do you have ten minutes? We want to hear from you about what issues you want us to address first 👇 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. Our survey is open for people affected by Huntington's disease, aged 18 and above. This includes people who support someone who is living with, or at risk, of Huntington's disease. 🔗Find the survey link here: https://loom.ly/PAwN_MU

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

May is National ALS Awareness Month, a time dedicated to raising awareness about this disease and the people affected by it. ALS is a neurodegenerative disease that affects nerve cells in the brain and spinal cord, gradually leading to the loss of muscle control and function. It affects people of all ages and backgrounds, and its impact reverberates not only through the lives of patients but also their families, friends, and caregivers. Here are a few ways to contribute during ALS Awareness Month: 1. Share informative posts, articles, and resources about ALS on your social media channels. 2. Engage with organizations and institutions working to find a cure for ALS. Consider making a donation or volunteering your time to help fund scientific studies and clinical trials aimed at better understanding the disease and developing effective treatments. 3. Participate in online events organized by ALS associations, advocacy groups, and research organizations. Webinars, panel discussions, and fundraisers provide opportunities to learn, share experiences, and contribute to the cause. #ALSAwarenessMonth #ALS #LouGehrigsDisease #Community #Advocacy #Research #Support

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

Psoriatic disease impacts not just individuals but also their loved ones. In this video, IFPA Ambassador Chiara shares her journey and how her family's support has been crucial in her experience. 💡 Watch the full film, 'Psoriatic Disease and the Family: Navigating Challenges Together,' to learn more about the impact of this disease on families. - https://lnkd.in/d7R-zwHN 🌍 Be a part of the change! Visit psoriasisday.org to participate in WPD 2024 and help raise awareness. #psoriaticdiseaseandfamily #WorldPsoriasisDay2024 #WPD2024 #Psoriaticdisease #psoriaticarthritis

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

Did you know that there are approximately 6,000 rare diseases affecting 3-6% of the global population? When a child is diagnosed with a rare disease, families can feel lost. At Shriners Children’s Portland, we offer individualized, compassionate care for these families. Meet Avery and Madison, two Shriners Children's Portland patients who embody resilience in the face of rare conditions, in our newest web story: https://lnkd.in/eu2kPRf6

Today marks the start of #GaucherAwarenessMonth. Gaucher is a rare, progressive disease with symptoms that worsen over time. Yet, patients with type 1 Gaucher disease, the most common form, can experience diagnostic delays up to 10 years. It's important to highlight patient stories in rare disease, here's one. #rareispowerful #raredisease #findthezebra