National Awareness Day

For rare genetic disorders, a day of awareness doesn't usually exist until a support group puts in time and effort into creating one. It can require a lot of hard work, resources, and connections. Here are recommendations on what groups are currently doing or have done in the past to crate a national awareness day for their condition:

• It may be a matter of what funds you have available, but my first best suggestion would be to find/hire a good lobbyist in DC. We did this and they worked wonders for us and with us…. You can go the direct contact to Reps and Senators route, but it may take a lot more of your time and effort, especially if you are not near enough to Capitol Hill to make regular personal visits.

• We’re in the midst of this process ourselves. It’s taken us a LOT of resources - and we’re not done yet – to get a listing on the National Health Observances calendar. Unless you’re a large group with good DC-based resources, this task is not so easily done and the current administration has eliminated the congressional naming of this day or that day. If you do invest in DC based representation, you might want to use them to help think through the value of a “day of” and how best to go about it if necessary. You might be better off just naming the day yourselves and doing whatever you want to do with it. You don’t need any official designation to accomplish that.