Rare Disease Day, February 28, 2010

Help VHL Family Alliance raise awareness of rare diseases and the need for safe, effective treatments, people around the world will join together to observe the 3rd Annual Rare Disease Day on the last day of February (Feb. 28, 2010). NORD is coordinating this project in the U.S., and is inviting all patient organizations, caregivers, researchers, and companies developing orphan products to join in this observance. The purpose is to focus attention on rare diseases, the challenges encountered by those affected, and the importance of research to develop diagnostics and treatments. As a NORD partner we encourage our members to help us use this event to spread awareness of VHL. Anything we do to observe Rare Disease Day directly promotes awareness of VHL as well.

Here's what you can do:

• Post news about Rare Disease Day on any blogs or online communities in which you participate. If possible, as the day approaches, consider making a video that you can send to robinco@vhl.org to be uploaded to YouTube on or before Rare Disease Day.
• Submit news about any accomplishments related to Rare Disease Day (stories published, etc.) to rarediseaseday@rarediseases.org for use by VHL Family Alliance. These will be shared with the other Partners.
• Submit human interest stories about individuals or families affected by rare diseases to rarediseaseday@rarediseases.org. These may be shared with media contacts to help increase awareness of what it’s like to live with a rare disease.
• Submit nominations of researchers for the Rare Disease Hall of Fame to rarediseaseday@rarediseases.org. Nominations should include one page or less of text describing the disease and the research in simple language. Include a photo of the researcher if possible. The purpose is to show that interesting and important research is being done on rare diseases, and that this work often teaches us things that are helpful in understanding more common diseases.

**Please send a copy of anything you submit for Rare Disease Day to robinco@vhl.org.

Click here for more information from the National Organization for Rare Disorders

Here's our Rare Disease Video on Youtube NOW!