Rare Disease Day (February 28) is mostly about bringing attention to all of the diseases and their impacts. New this year is a related fundraising day, Give RARE Day, on March 3. The event was designed to acknowledge that more people are directly affected by a rare disease, more than the number of cancer patients who get more attention and research dollars.
The Network is participating in this first-ever Give RARE Day, primarily to raise funds for the next XLH Day (after the West Coast event on April 9-10). You can find our page here: http://giverare.razoo.com/story/Xlh-Network
We've heard from a number of our members that they would like to see more XLH Day events in more locations. We can't do that with our currently available funds or the amounts we expect to receive in our year-end funding. We can only host more events if we have additional funding and support from our members.
If you'd like to contribute to a fund for the next XLH Day (or other Network programs), Give RARE Day is an opportunity to do just that. There are a few ways you can help. First, you can make a donation yourself on March 3rd, which could make us eligible for additional funds from corporate sponsors. Second, you could simply spread the word on social media, using the #GiveRARE and #XLHNetwork hashtags on March 2 and 3. And finally, if you've ever wanted to hold your own fundraiser for the Network, but didn't know where to start, you can do it easily using the Give Rare platform.
To set up your own crowdsource-fundraiser connected to Give RARE Day, just go to our page, and you'll see an option to "fundraise for this cause." If you click on that link and set up an account, the money you raise by sharing your page with your contacts will go to the XLH Network, Inc., without your having to manage it yourself.
The platform is full of useful hints for setting up your page, and when you sign up, you'll get an email with some suggestions for spreading the word about Give RARE Day (like putting the link to your page in your email signature line and on your facebook profile!), a lot of which is automated. You can also see examples of individual pages set up by Board members (and at least one other volunteer at the time this post was written) at the XLH Network's Give RARE page. It only takes a few minutes, and if you get stuck, the platform's support team can help you (they're excellent, and should be able to answer all your questions if you send an email to email@example.com).