Theranica’s Post

Living with a rare disease can be a challenging journey, but individuals facing these conditions are far from alone. Across the globe, dedicated advocacy organizations are working tirelessly to offer support, resources, and a sense of community for both patients and families dealing with rare conditions. These groups play a crucial role in raising awareness, driving research forward, and advocating for policies that enhance the lives of those affected by rare diseases. EURORDIS National Organization for Rare Disorders Global Genes

🔍 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

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

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

Yes, 2024 is a Leap Year, so that means Rare Disease Day is February 29th! Find out more about Rare Disease Day by checking out this post from Global Genes #rarediseaseresearch #rarediseaseawareness #patientadvocacy #

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.

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

Last month, we partnered with eight other organizations to celebrate the third annual ILD Day! Each ILD Day includes a very special webinar presentation. The webinar is now available on YouTube. This one-hour webinar presentation discussed why oxygen is a physiological problem with interstitial lung disease (ILD) and why supplemental oxygen is recommended. The webinar included important info about portable oxygen containers, how to get involved in oxygen advocacy initiatives, and where to find helpful information and resources. https://lnkd.in/gcxNcHfM

🌟 September is Sickle-Cell Awareness Month! 🌟 Did you know that Sickle Cell disease disproportionately affects the African American population? It's crucial that we all come together to raise awareness and support those living with this condition. 💪🏾 📊 According to the CDC, approximately 1 in 365 Black or African American babies is born with Sickle Cell disease. This is a staggering statistic that highlights the urgency of the issue. 💡 It's not just about raising awareness, it's about taking action. Knowledge is power! Visit aawellnessproject.org to learn more about Sickle Cell disease, its impact, and how you can make a difference in the lives of those affected. Let's spread the word, show our support, and work towards a healthier future for everyone. 💚 Together, we can make a difference! #SickleCellAwareness #AfricanAmericanHealth #FightSickleCell #StayInformed #AAWellnessProject #HealthMatters #TogetherinThis #AAWP #SickleCell

🌟🌈 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