June is Migraine Awareness Month! Migraine disease is one of the most misunderstood and underdiagnosed chronic conditions, impacting 100 million adolescents worldwide. This June, we’re shining a light on several stories from adolescents living with migraine disease to promote research, education, and advocacy to improve the lives of these underserved populations. By sharing these personal experiences, we hope to raise public knowledge, address the stigma around migraine, and build a stronger community of provider and patient advocates. Learn more about Migraine Awareness Month from Coalition for Headache & Migraine Patients by going here: https://lnkd.in/eq4XefW
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Welcome to ISMRD’s LinkedIn! We are so happy you have found us! ISMRD exists to advocate for families worldwide affected by a Glycoprotein Storage Disease. Through partnerships built with medicine, science and industry, we seek to detect and cure these diseases, and to provide a global network of support and information. These diseases include Alpha-Mannosidosis, Aspartylglucosaminuria, Beta-Mannosidosis, Fucosidosis, Galactosialidosis, Mucolipidosis II Alpha/Beta, Mucolipidosis lll Gamma, Schindler Disease, and Sialidosis. We will be posting stories to raise awareness of these rare diseases as well as how you can get involved with ISMRD. We’d love for you to stay connected with us. #raredisease #lysosomaldiseases #lysosomalstoragedisesases #awareness #advocacy #alphamannosidosis #betamannosidosis #aspartylglucosaminuria #fucosidosis #galactosialidosis #mucolipidosisalphabeta #mucolipidosisIIIgamma #schindlerdisease #sialidosis #glycoprotein #glycoproteinstoragediseases
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🔍 Rare Disease Day: Advocating for Awareness and Support 🔍 Today, on 29th Feb 2024 Rare Disease Day, Avyukt joins the global effort to shed light on the challenges faced by individuals with rare diseases. Rare diseases affect millions worldwide, yet they often go unnoticed or misunderstood. At Avyukt, we stand in solidarity with those impacted by these conditions. Through education, advocacy, and support, we strive to raise awareness about rare diseases and the unique needs of those affected. Join us as we work to break down barriers, increase access to resources, and foster a more inclusive and supportive community for individuals with rare diseases. Together, let's ensure that no one faces the challenges of rare diseases alone. #RareDiseaseDay #Awareness #Support
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Today is World Rare Disease Day! #RareDiseaseDay is a global effort to bring attention to various rare diseases and acknowledge that #RareIsMany. Organised by EURORDIS and carried out locally by 65+ patient organisation partners from 65 countries. Rare Disease Day provides a focal point for rare disease advocacy work on a local, national, and international level. Rare Disease Day helps improve the lives of the 300 million people worldwide affected by a group of rare diseases, by sharing a tapestry of colours. This is via social media, holding events, illuminating buildings and homes, sharing experiences online and with friends, and shining a light on individuals living with a rare disease. People suffering from a rare condition will benefit from the programme by gaining access to diagnostics and treatments. Aid is given to patient advocacy groups, patient associations, and others engaged in lobbying policymakers for equal support for rare diseases. You can find out more and support the rare disease day initiative here; https://lnkd.in/edUafpg7. #RareDiseaseDay #careaboutrare #rarediseaseawareness #rarediseases #rarediseaseday
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Healthcare & Health Tech innovation | Business development Executive | Patient Advocate | AI | Digital Transformation | Consultant | 4 languages | Passionate about People & Leadership Development
Rare Disease Day 2024, taking place today, on February 29th, raises awareness for the 300 million people living with a rare disease worldwide. Initiated by EURORDIS-Rare Diseases Europe in 2008, the campaign aims to achieve equity for individuals affected by rare disorders worldwide and is now being managed with the assistance of over 65 national alliance partners. This global moment emphasises the importance of listening to the voice in influencing global policymakers and supporting policy advancements. Raising awareness nationally with the Alliance maladies rares and internationally about rare diseases is essential because it illuminates the unique difficulties experienced by people who are impacted. From struggling to get a correct diagnosis due to limited knowledge among healthcare professionals to the financial burden of accessing expensive treatments, people often face uphill battles. We can lead to better resources, research, and eventually a higher standard of living by telling experiences of both patients and care givers. 💙 #RareDiseaseDay #ShareYourColours #LightUpForRare #RaisingAwareness #Campaign #advocacy #europe Alliance maladies rares
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A little insight into some of the work that we have focused on at WDF in recent years and what we are trying to achieve with our support.
Discover our first Impact report, encompassing the strides made over the past two decades in the global Non-Communicable Disease arena. 📊 Dive into the details of how our programmes, advocacy efforts, and learnings enable change in low – and middle-income countries. 🌍 Thank you to all the partners who have joined us in our global fight against diabetes. 💙 Visit our interactive impact page today ➡ https://bit.ly/3vWbGgq World Health Organization, Jhpiego, International Diabetes Federation
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The theme of World Chagas Disease Day today — “Tackling Chagas disease: detect early and care for life” — aims to raise public awareness and secure funding for early detection and comprehensive care initiatives. Although most prevalent among poor communities in Latin America, Chagas disease is increasingly detected globally. It has been called a “silent and silenced disease” due to its lack of symptoms in the majority of cases, but a missed or late diagnosis is potentially life-threatening. Pharmacists support communities against vector-borne diseases through education on prevention methods, vaccine advocacy, treatment optimisation and reducing social stigma. FIP provides support with a handbook: https://lnkd.in/dU5iMMc. #WorldChagasDisease #VectorBorneDiseases
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Strategic Head of Business Development | Driving Revenue Growth with Innovative Solutions | Relationship Builder & Deal Maker | Passionate about Building Strong Partnerships & Collaborations
Have you heard about Rare Disease Day? Do you know of someone who has a rare disease? Rare Disease Day is an important platform that aims to create awareness and support for the millions of people worldwide who are affected by rare diseases. This annual event, which is celebrated on February 29th, is dedicated to educating others about the challenges faced by individuals with rare diseases and advocating for better diagnosis, treatments, and social support. By actively participating in Rare Disease Week activities and events, individuals can contribute to a global movement that promotes empathy, research funding, and legislative changes to improve the lives of those living with rare diseases. Effective communication and increased awareness are key in shedding light on the stories of patients, families, and communities impacted by rare diseases. By actively engaging in social media campaigns, attending events, sharing personal stories, and supporting advocacy initiatives, each individual has the power to make a significant difference in raising awareness and positively impacting the lives of those affected by rare diseases. Together, we can create a more inclusive and supportive world for everyone. #rarediseaseday2024 #awareness #effectivecommunication
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7 in 10 people worldwide live with one or more chronic diseases, conditions that persist for more than a year. While some chronic diseases are preventable and treatable, others demand ongoing research to enhance understanding, develop effective diagnostics, and create new treatments—with the ultimate goal of finding cures. On Chronic Disease Day, we want to spread awareness, acknowledge those living with these conditions, and honor the dedicated researchers worldwide who tirelessly pursue answers to these complex health challenges. Beyond spreading awareness, we're grateful for being able to support labs across the globe and fostering substantial advancements in research For more information, including ways to contribute to Chronic Disease awareness and research, visit https://lnkd.in/dZMdKcv #chronicdiseaseday #chronicdiseaseday2024
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World Rare Disease Day!🥰🥰 🌟 Today, on Rare Disease Day, let's shine a spotlight on the millions of individuals around the world who bravely navigate life with rare diseases. Their journeys are often marked by resilience, strength, and unwavering determination. 💡 It's crucial that we raise awareness about these lesser-known conditions, as they collectively affect millions globally, yet often receive limited attention and resources. By amplifying their voices and sharing knowledge, we can foster greater understanding, empathy, and support for those living with rare diseases. 🤝 As we commemorate Rare Disease Day, let's reaffirm our commitment to advocacy, research, and healthcare accessibility. Together, we can strive to improve diagnosis, treatment options, and ultimately, the quality of life for individuals and families affected by rare diseases. 💙 Join me in standing in solidarity with the rare disease community today and every day. Together, we can make a difference. #rarediseaseday2024 #ShowYourRare #Awareness #Advocacy #HealthcareEquality
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🌟🌈 Rare Disease Day may have been yesterday, but let's remember that our commitment to helping these patients extends far beyond just one day of awareness! 💪🦄 While it's incredible to see buildings lighting up and the world coming together to raise awareness, the challenges faced by individuals with rare diseases persist all year round. Let's remember their resilience and highlight the importance of ongoing support and research for these often overlooked conditions. 🌍💙 Let's make sure that the voices of those with rare diseases are heard loud and clear. 🤝💜 So, what can you do to make a difference? Here are a few simple steps you can take: 1️⃣ Educate yourself: Learn more about rare diseases and the specific challenges faced by individuals living with them. Share your knowledge with others to raise awareness. 2️⃣ Support patient advocacy groups: Donate your time, funds, or resources to organizations that are dedicated to supporting individuals with rare diseases and their families. 3️⃣ Be a voice: Speak up for those who may not have a platform. Share stories, experiences, and information about rare diseases on social media or through other channels to raise awareness and promote understanding. 4️⃣ Advocate for research: Support initiatives that aim to advance research and development of treatments for rare diseases. Reach out to your local representatives and urge them to prioritize funding for rare disease research. 5️⃣ Show empathy and kindness: Be understanding and compassionate towards individuals with rare diseases and their families. Small acts of kindness can go a long way in making a positive impact. Together, we can make a difference and advocate for better resources, research, and support for these individuals and their families. 🤝💜 #RareDiseaseDay #RareButEqual #BeyondAwareness #RareDiseasesMatter #TogetherWeCan #MakeADifference #NeverGiveUp #Resilience #Advocacy #Support #Research #Hope #Community
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good luck