![]() Check out the images we left you, you can change the words, write I #StandUnited4CDG and I support Rare Disease Day. Visit our CDG toolkit and print one of the messages to support CDG and the Rare Disease Day. Wear printable clothes to call attention - you can make a print on a t-shirt.In 2022, a campaign led by Rare Disease Day saw over 650 buildings lit up to show their support for Rare Disease Day, raising awareness for people living with a rare disease, and spreading hope and color around the world.Interact with organizations on social media, or share their toolkit. ![]() Post in your social network about rare diseases, explain why you care, and join the movement.If you wish to organize an activity contact us Organize, or join a Rare Disease Event: Webinars, conferences, storytelling, and sessions are held all over the world, find them at the events section of key organizations such as Rare Disease Day, Global Genes, and World CDG Organization.During the February month we will be with a campaign to celebrate the Rare Disease Month, join us at Facebook, Twitter and LinkedIn. Join us as we celebrate #RareDiseaseDay or #RareDiseaseMonth to raise awareness of the cause, follow us on social media and share our posts.Here’s what you can do to help elevate the cause and shine a light for people living with a rare disease and caregivers around the world: There are plenty of activities to raise awareness for this day. Everyone, including individuals, families, caregivers, health professionals, researchers, clinicians, policymakers, industry representatives, and the general public, can help raise awareness and take action for this vulnerable group that needs help right away. Rare Disease Day is a great example of how things keep getting better as events are held all over the world each year. Rare Disease Day is a chance to promote and advocate for rare diseases as a human rights issue at the local, national, and international levels as we work toward a more inclusive society. What can you do to help elevate the cause and shine a light on rare disease patients and caregivers on Rare Disease Day? For the 15th edition of Rare Disease Day in 2022, over 100 countries and regions have joined their voices, organizing over 600 different types of events around the world. In 2010, 46 countries participated in awareness campaigns by 2014, 84 countries led over 400 events worldwide and in 2018, 80 nations participated in that year's events. Over 600 patient advocacy and support groups plan events in Europe, and EURORDIS is in charge of helping coordinate most of them. Local, national, and international efforts to help people with rare diseases can move forward because of the energy and focus of Rare Disease Day. Rare Disease Day is celebrated all over the world. Organizations like EURORDIS, NORD, the National Institutes of Health (NIH), or Share4Rare host webinars where families can meet with others, talk, share ideas about their rare disease, and also have opportunities to talk to medical professionals and social workers who can tell them where to find support services. ![]() There are also important events and educational initiatives that are part of this awareness campaign. ![]() To mark the day, patients, their families, caregivers, researchers, advocates, and many other stakeholders take part in a wide variety of activities.Ī huge awareness campaign can be seen on social media, where people share photos, videos, and their own experiences through storytelling or media interviews. On Rare Disease Day, the community comes together to gain visibility and spread awareness about people and their families living with a rare disease. In 2009, Rare Disease Day became an international event, with the National Organization for Rare Disorders (NORD) mobilizing 200 rare disease patient advocacy organizations in the United States, while organizations in China, Australia, Taiwan, and Latin America also led efforts in their respective countries to coordinate activities and promote the day. EURORDIS and its national alliance of patient organization partners established Rare Disease Day. The day was founded in 2008 by the European Organisation for Rare Diseases (EURORDIS) to bring awareness to diseases that often go undiagnosed or neglected. The purpose is to bring families with rare disease diagnoses together so they can build their network, talk to researchers, and learn more about the resources and services that are available to them.
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