VASCERN, European Reference Network on Rare Multisystemic Vascular Diseases’ Post

You never really think that you'll join a rare disease community. I joined this community in 2017 when my mom was (finally!) diagnosed with multiple system atrophy and passed away a few months later. I'm honored to spend this Rare Disease Day 2024 with the board of The Multiple System Atrophy Coalition. In our board meeting, we're focusing on our 3-year strategic plan and whether we're headed in the right direction in three key areas: advocacy and awareness, research, education and support. 𝐇𝐞𝐫𝐞 𝐚𝐫𝐞 𝐚 𝐟𝐞𝐰 𝐟𝐚𝐜𝐭𝐬 𝐭𝐡𝐚𝐭 𝐀𝐋𝐋 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞𝐬 𝐬𝐡𝐚𝐫𝐞: 🤔 Lack of scientific knowledge and quality information often delays diagnosis (and doctors often get it wrong). 💰 It is challenging for people to get the healthcare and services they need, often resulting in social and financial burdens on patients. 🌐 Experts, researchers and doctors must collaborate globally to develop better treatments and cures. 𝐒𝐨 𝐰𝐡𝐚𝐭 𝐜𝐚𝐧 𝐲𝐨𝐮 𝐝𝐨 𝐭𝐨 𝐬𝐮𝐩𝐩𝐨𝐫𝐭 𝐭𝐡𝐞 𝐫𝐚𝐫𝐞 𝐝𝐢𝐬𝐞𝐚𝐬𝐞 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲? 🗣️ Use your voice (or vote) to advocate for rare disease legislation. 🤲 Donate to an accredited non-profit organization. 📘 Learn how you can support the rare disease community personally and professionally. The US-based National Organization for Rare Disorders is a tremendous global resource. #rarediseaseday2024 #multiplesystematrophy #rarediseaseawareness

Listen up Australia! It’s National Pain week, Australia’s annual event dedicated to raising awareness about chronic pain. 📅 Let’s shine a spotlight on the experiences of those living with chronic pain, and break down the barriers they face. 💡 Education webinars are being held to enhance the awareness of chronic pain management across Australia, and you can be involved! Click the link below to donate, register for more information, or to join daily webinars and support this cause! ✨ https://vist.ly/3fbhi Join us in raising awareness and changing the conversation around chronic pain. Together, we can make a difference. 💪💬 #NationalPainWeek #ChronicPain #PainChanger #Awareness #Support #TheLucyRoseClinic #Australia #Thyroid #Naturopathy #ThyroidNaturopath #HormoneNaturopath #HormoneSpecalist #ThyroidSpecialist #HolisticHealth #FunctionalMedicine

🌟 Empowering Thalassemia Patients Together 🌟 At FAiTh, we are dedicated to supporting thalassemia patients and their families through a variety of impactful projects and initiatives. Here are some of the ways we are making a difference: 1. Awareness Sessions - Educating communities about thalassemia. 2. Doctor Clinics - Providing expert medical consultations. 3. Provision of Medicine - Ensuring free access to essential medications. 4. Social Support - Offering emotional and practical support to families. 5. Medical Guidance - Providing professional medical advice and follow-ups. 6. Corporate Contributions - Partnering with businesses to enhance our reach. 7. Remote Patient-Support - Offering virtual consultations and support. 8. Donations Management - Efficiently managing and utilizing donations. 9. Rozgar Program - Assisting in the establishment of small businesses. 10. Recreational Activities - Organizing events to uplift spirits. 11. Blankets Distribution - Providing warmth to those in need. 12. Water Dispensers - Ensuring access to clean drinking water. 13. Ration Program - Distributing essential food supplies. Join us in our mission to make a positive impact! Your support can transform lives. 💙 #FAiThPK #thalassemia #ThalassemiaSupport #CommunityCare #Empowerment

Know Pain. Know SCD. Did you know that over 100,000 Americans live with sickle cell disease (SCD), a debilitating blood disorder that causes excruciating pain? September is Sickle Cell Awareness Month, but raising awareness shouldn't stop there. Here's how YOU can make a difference: 1. Educate Yourself & Others: Share reliable info about SCD. Talk to friends, family, and even your local librarian about hosting an educational event. 2. Support Advocacy Groups: Organizations like the Sickle Cell Disease Association of America rely on community support. Donate, volunteer, or even participate in a fundraising walk/run! 3. Amplify Patient Voices: Follow and share stories from SCD warriors on social media. Use hashtags like #SickleCellDisease and #SickleCellStrong to raise awareness and show your support. Together, we can create a brighter future for those living with SCD. Want to get more involved? As a certified sickle cell educator & counselor, Morgan Legacy Group, LLC offers FREE consultations to discuss ways you can advocate and make a difference. Schedule yours today at https://lnkd.in/eRH5rQsF Together, let's turn awareness into action! #MorganLegacyGroup #TurningAdvocacyIntoAction #InMemoryOfAnwarSeanHall #SCD #RaisingAwarenessTogether #EachOneTeachOne

This Giving Tuesday, join NCARD in our mission to address one of Australia's most challenging health crises. Australia has one of the highest rates of #mesothelioma in the world, with 700-800 people diagnosed each year. In 2022 alone, 685 Australians lost their lives to this devastating disease, with healthcare costs of $33.7 million. Behind each statistic is a family facing one of the most aggressive forms of cancer, a community impacted, and a story that drives our dedication to advancing treatments. At NCARD, our researchers are committed to improving patient survival through groundbreaking research. But we can't do this vital work alone. Your support on Giving Tuesday can help accelerate our research and bring hope to families affected by asbestos-related diseases. Your donation, no matter the size, contributes directly to: 1. Pioneering new treatment approaches 2. Advancing early detection methods 3. Supporting clinical trials that could save lives 4. Improving quality of life for patients Make your Giving Tuesday count by supporting our work: https://lnkd.in/gwaGNXMc Every donation brings us one step closer to better treatments and improved survival. This Giving Tuesday, be part of the solution. #GivingTuesday #NCARDresearch #ResearchMatters #MesotheliomaResearch

❤ Heart Disease: Myths vs. Facts ❤ Did you know that heart disease is the leading cause of death in the United States? Even though it is so common, there’s still a lot of misinformation that can impact how we approach prevention and treatment. Heart disease is preventable, and the American Heart Association is doing incredible work to fund research, promote heart health, and save lives. Join me in supporting this cause! I’m fundraising to benefit the AHA, and your contribution can help advance life-saving research and programs. Every dollar counts! Click here to donate: https://lnkd.in/g556aeud Together, we can help make a big impact in so many lives! ❤️ Let’s clear up some common myths and facts about heart disease: 🔴 Myth: Only older adults are at risk for heart disease. ✅ Fact: Heart disease can affect people of all ages, including young adults. Risk factors like family history, high blood pressure, and lifestyle choices can increase your chances at any stage of life. 🔴 Myth: Heart disease only affects men. ✅ Fact: Heart disease is the #1 killer of women as well, and it often presents differently in women. Awareness and early detection are key to saving lives. 🔴 Myth: You would know if you're having a heart attack. ✅ Fact: Heart attacks can sometimes come with subtle symptoms, especially in women. Chest pain is common, but shortness of breath, nausea, or fatigue can also be warning signs. 🔴 Myth: Heart disease is inevitable if it runs in your family. ✅ Fact: While genetics play a role, lifestyle changes like a balanced diet, regular exercise, and managing stress can significantly reduce your risk. #HeartHealth #HeartDisease #AmericanHeartAssociation #Fundraiser #SupportTheCause #HealthAwareness #PreventionMatters

TODAY IS WORLD PARKINSON'S DAY! 🌎🌷 The European Parkinson’s Disease Association (EPDA) and the World Health Organization established World Parkinson’s Day on April 11th, 1997. April 11th is the birthday of Dr. James Parkinson🎂. He was the first physician to recognize Parkinson’s as a medical condition. He published an essay in 1817 called, “An Essay on the Shaking Palsy.” If you are wondering how to recognize World Parkinson's Day, here are a few ideas: - 💐 DO something special for someone you know with Parkinson's disease or their caregiver. Send a note, get them flowers, spend time with them, or give them a call. - 💰 DONATE to a Parkinson's charity. All Parkinson's charities help the PD community in their own way, but each one has their own distinct mission. For instance, PFWPA does not conduct Parkinson's research, but we do help the local PD community live their best life by offering exercise classes, support groups, personal consultations, caregiving resources, educational webinars, events, and more. Learn more here: https://pfwpa.org/ - 🧐 LEARN more about the disease so you can be more knowledgable and helpful if you are around someone with Parkinson's. Did you know that loss of smell and constipation are two common early warning signs of PD? Watch some of our educational videos on our YouTube channel to learn more! https://lnkd.in/e-cVQnth - 🗣️ SPREAD the word! It is important to spread awareness of this special day. Share this on your social media page or mention it to a friend. #pfwpa #WorldParkinsonsDay #ParkinsonsAwarenessMonth #parkinsonsresource #parkinsons #parkinsonsdisease #parkinsonscommunity

Today, as I passed this impactful advertisement from the Cystic Fibrosis Trust, it made me realize just how crucial it is to raise awareness for conditions like cystic fibrosis. The message, "We won't stop until everyone with cystic fibrosis can live a life unlimited," is a powerful reminder of the ongoing challenges faced by those affected and the relentless efforts needed to support and eventually cure this life-limiting disease. As someone who believes in the power of healthcare advancements and community support, I feel it's vital we all contribute to this cause. Whether through spreading the word, donating, or volunteering, every action counts towards building a better future for those dealing with cystic fibrosis. 💛💛 #CysticFibrosis #HealthAwareness #CommunitySupport #MakeADifference

Way to go St. Mary's General Hospital Being an organ donor is a personal decision that can have a significant impact on saving lives. Some things to consider. Saving Lives: Organ donation can save lives and improve the quality of life for those in need of transplants. Legacy of Giving: Being an organ donor allows you to leave a lasting legacy by giving the gift of life to others.

Know Pain. Know SCD. Did you know that over 100,000 Americans live with sickle cell disease (SCD), a debilitating blood disorder that causes excruciating pain? September is Sickle Cell Awareness Month, but raising awareness shouldn't stop there. Here's how YOU can make a difference: 1. Educate Yourself & Others: Share reliable info about SCD. Talk to friends, family, and even your local librarian about hosting an educational event. 2. Support Advocacy Groups: Organizations like the Sickle Cell Disease Association of America rely on community support. Donate, volunteer, or even participate in a fundraising walk/run! 3. Amplify Patient Voices: Follow and share stories from SCD warriors on social media. Use hashtags like #SickleCellDisease and #SickleCellStrong to raise awareness and show your support. Together, we can create a brighter future for those living with SCD. Want to get more involved? As a certified sickle cell educator & counselor, the Morgan Legacy Group offers FREE consultations to discuss ways you can advocate and make a difference. Schedule yours today at https://lnkd.in/g5ZnfUGq Together, let's turn awareness into action! #MorganLegacyGroup #TurningAdvocacyIntoAction #InMemoryOfAnwarSeanHall #SCD #RaisingAwarenessTogether #EachOneTeachOne