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WHAT?
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
The campaign targets primarily the general public and also seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
Why?
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.
WHO?
Rare Disease Day events are down to hundreds of patient organizations all over the world who work on a local and national level to raise awareness for the rare disease community in their countries.
Since Rare Disease Day was first launched by EURORDIS and its Council of National Alliances in 2008, thousands of events have taken place throughout the world reaching hundreds of thousands of people and resulting in a great deal of media coverage. We especially thank our official Rare Disease Day partners, the National Alliances. These are umbrella organizations who group together several rare disease organizations in a given country or region. Click on a logo of one of the National Alliances to go to their website.
We will next Consider How the American Porphyria Foundation Plays a major part in this stayed tuned all this week so that you can prepare NOW to be apart of this very special day worldwide.
To check out about Frames, Pictures, things you can incorporate into your FB Twitter or Instagram is all considered at this link: https://www.rarediseaseday.org/article/what-is-rare-disease-day
If you would like to submit your story so that future generations can understand your type of porphyria and how you were diagnosed, the struggles and the medication that may have changed your lives please send them to amy@porphyriafoundation.org or edrinw@porphyriafoundation.org
We hope this gives you something to look forward to and plan this month!
