On Rare Leap Day, Remember Rare Diseases

For those who have a child with a rare disease, Talbot recommended always having a pen and paper in hand at doctor's visits.

"Write down names, tests [and] have the doctors spell out those long medical words," said Talbot, of Cumming, Ga. "Your brain is not all there at the moment, but you can look back on your notes and research things later. That way, you're being your child's biggest advocate."

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For Danielle Leach, director of partnerships at Inspire.com, a health and wellness social network that covers a wide range of health conditions and diseases, it is those connections that make her job so worthwhile, she said. At Inspire, many rare disease patients and family members find, for the first time, other people who are affected by the same conditions.

"It's very difficult when you have a child with a critical condition because it's a very alienating experience," said Leach. "You're literally living other people's worst nightmare, so it's sometimes hard to talk to a best friend who has a healthy kid."

"It's such an important tool to talk about the real, ugly side and the raw emotion that comes along with having a kid with a critical condition," she added. "It's such a huge leap when someone finds that first connection with someone else sharing their experience."