Rare Disease Day的动态

It’s not too late to join our upcoming webinar on 10 July to discuss the launch of the new #RareBarometer survey on the impact of rare diseases in daily life. This survey, available in 25 languages, aims to gather invaluable insights from the rare disease community worldwide. The webinar will delve into the survey's objectives, exploring how people living with a rare disease navigate day to day life. We will also discuss strategies to promote the survey effectively to help ensure maximum engagement and impact. In this webinar, we aim to: Understand the survey's goals and significance. Discuss strategies to promote the survey within your networks Provide insights into the expected outcomes and how they will inform advocacy and action ?? 10 July 2024 ?? 2:30pm CEST ?? Register Here: https://lnkd.in/embvg_79 Join us to learn how you can contribute to this vital research and help amplify the voices of the rare disease community. By joining the Rare Barometer panel, taking the survey or spreading the word through your networks, you can make a significant difference! #RareBarometer #EURORDIS #rarediseases

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

Today we celebrate Rare Disease Day, on the rarest day of the year! At Initiate we are proud friends and supporters of Rare Disease Day, a cause that deeply resonates with us as a company and as individuals. Rare diseases affect countless lives globally, yet often remain in the shadows of mainstream awareness. We believe in raising awareness, driving research and amplifying the voices of individuals affected by rare diseases. Don't miss our newly launched podcast Initiation (on Spotify) where we kick off by interviewing 'The Blind Chocolatier' who has been impacted by Leber's hereditary optic neuropathy, a rare inherited disease that causes vision loss. As we observe Rare Disease Day, we are proud to show our colours in support of those impacted by rare diseases and raise awareness for this important cause. Together, let's continue to champion Rare Disease Day, spark conversations, and advocate for a future where every individual, regardless of the rarity of their condition, is embraced with compassion, understanding, and inclusivity. #RareDiseaseDay #RareDiseaseAwareness #Advocacy #Community #MakeADifference

Become #APOL1Aware and join American Kidney Fund for AMKD Awareness Day on April 30. Learn more about APOL1’s connection to kidney disease and spread the word: kidneyfund.org/APOL1aware #GeneChat?

Honoring Rare Disease Day: Championing Hope, Awareness, and Action! Today, we unite to shine a spotlight on the often overlooked yet profoundly impactful realm of rare diseases. As we commemorate Rare Disease Day, it's not just about acknowledging the challenges faced by those affected, but also about igniting a collective flame of advocacy, innovation, and support. In our journey towards a healthier, more inclusive world, understanding and addressing rare diseases is paramount. These conditions affect millions worldwide, each with its unique set of hurdles and intricacies. However, within the rare lies the extraordinary - stories of resilience, innovation, and unwavering determination. Join me in honoring Rare Disease Day, and let's continue our journey of advocacy, compassion, and impact. Together, we can make a difference. #RareDiseaseDay #HopeInAction #TogetherWeCan #ThatsICONic

Rare Disease Day was first observed in 2008 by #EURORDIS and the Council of National Alliances to raise awareness about #rarediseases. It falls on the last day of February, but in leap years like 2024, it is observed on February 29th. This day aims to shed light on the challenges faced by individuals and families affected by rare diseases. #rarediseaseday Rare Disease Day EURORDIS-Rare Diseases Europe

?? This Rare Disease Day, we're not just raising awareness; we're celebrating a remarkable milestone. For 35 years, Genetic Alliance Australia has been a pillar of hope and support for individuals and support groups touched by rare diseases. ?? Thirty-five years of advocacy, understanding, compassion, and community. Thirty-five years of standing shoulder to shoulder with those on a journey less traveled. Our mission has always been clear: to ensure that no one on this path walks alone. ?? From our earliest days to now, we've seen firsthand the power of unity. We've shared stories, wiped tears, celebrated victories, and pushed for change. And through it all, our commitment to you – our rare disease community – has never wavered. ?? Today, we honor every individual, every family, every support group that's part of our story. You inspire us, drive us, and remind us why our work matters. Here's to you, and here's to the next chapter in our journey together. ?? So, let's make some noise this Rare Disease Day! Let the world hear our stories and see our strength. We are rare, we are mighty, and together, we are unstoppable. #RareDiseaseDay #35YearsStrong #RareButResilient#RareDiseaseDay2024 #LightUpForRare #ShareYourColours #geneticallianceaustralia #raredisease

?? Today, on Rare Disease Day, we recognize the profound impact of these conditions worldwide. With over 10,000 rare diseases affecting 400 million individuals globally, the scope of this challenge is significant. Reflecting on my postgraduate studies in Clinical Trials and the crucial role of orphan drugs, it's clear that addressing rare diseases remains a pressing priority. Let's join forces to advance therapies and treatments, offering hope to those affected by these conditions. #RareDiseaseDay #OrphanDrugs #ClinicalTrials?

Rare Disease Day! Bringing awareness to Rare Diseases. Supporting those who maybe living through the unknown. Sometimes there are just no answers. Care and treatment is a path not taken before, but with research, everyday there are new developments, treatments and directions of care. #rarediseaseawareness #rarediseaseday2024 #rarediseaseday #psc #pscsupport

Rare diseases, more than likely, have affected the lives of someone you know and love. Take some time today to reflect on health and how important it is. #rarediseaseday #rarediseaseday2024 #biologics #biotechnology