News
2012 will mark the fifth anniversary of Rare Disease Day
Alpha-1 Antitrypsin Deficiency among many underdiagnosed
MIAMI – Millions of people around the world suffer from rare diseases that affect their everyday lives, yet we don’t take the time out to give them the recognition they deserve. International Rare Disease Day aims to remedy this issue. Rare Disease Day will be marked in more than 40 countries on Feb. 29, 2012. For the fifth straight year, events and activities are planned to help bring light to overlooked rare diseases and those affected by them.
The Alpha-1 Foundation continues to support Rare Disease Day as an important way to draw attention to the many people with Alpha-1 Antitrypsin Deficiency and other rare conditions, often not properly diagnosed and usually under-served.
Rare Disease Day aims to give hope and information to patients as well as helping them obtain equal access to care and treatment.
An essential part of Rare Disease Day is supporting the campaign and having your voice heard. There are many ways to get involved and help raise awareness such as organizing fundraising events, displaying posters, distributing stickers and flyers, as well as sharing personal stories.
According to Rarediseaseday.org, 6,000-8,000 rare diseases have been identified worldwide, with no cure for the majority of them.
Anyone with a rare disease or health condition is encouraged to tell their own personal story here.
To find out more information on ways to get involved with Rare Disease Day, visit http://www.rarediseaseday.org/.
