Join EBD Group in observing World Rare Disease Day (WRDD) on February 29 and raising awareness of the difficult challenges faced by more than 400 million people around the world who suffer from a rare disease. WRDD is an annual observance held on the last day of February to raise awareness for rare diseases, in hopes of improving access to treatments and medical representation for affected individuals. On average, one out of ten people is affected by a rare disease, and three out of ten children with a rare disease will not live to see their fifth birthday.
Thankfully, organizations and patient advocacy groups like Global Genes, one of the leading rare disease patient advocacy organizations worldwide, and a consistent supporter of this important day, are working to combat these heartbreaking statistics. Since 2009, Global Genes and hundreds of patient advocacy organizations around the world have engaged in awareness-raising activities developed by Global Genes in support of World Rare Disease Day!
"At Global Genes we work every day to empower the more than 400 million rare disease patients globally and their caregivers and advocates. One of the ways we empower the community is by bringing awareness to them. Activities like World Rare Disease Day bring visibility to everyone in the rare disease community, making it easier to connect and collaborate with people who can help develop treatments and cures for the more than 7,000 known rare diseases." - Kimberly Haugstad, CEO, Global Genes.
There will be various activities taking place all over the United States, as well as countless locations around the world. If you are interested in taking action for the rare disease community to shine a light on rare disease patients and caregivers around the globe, here are a few ways you can help:
Share on social media
Be a social advocate for the rare disease community by using #WRDD2020 and #CareAboutRare. Four hundred million people worldwide are affected by rare diseases and a simple share on social media could create big waves in increasing awareness, funds, and support for the community.
Participate in local World Rare Disease Day events to help raise awareness and learn how to positively impact those with a rare disease in your community. You can link to Global Genes WRDD page for details about how to get involved: https://globalgenes.org/world-rare-disease-day/.
Get involved and stay involved. Join us later this year to connect with key stakeholders and propel curative progress at the Rare Disease Innovation and Partnering Summit in Boston from June 24–26.