However rare any individual disease may be, rare diseases are not that rare-- and neither are the challenges that include advocating for oneself with providers, finding experts in the field, and getting access to affordable and effective treatments without additional bureaucratic hoops. If we improve access, affordability and representation for rare disease patients, we make the whole healthcare system better for all families. What's more, rare disease research also helps cure and treat many other, more common diseases.

Send this message to all your elected representatives at the federal and state level: Rare disease affects all families. We need better diagnostics, better treatments and more access to experienced providers. We also need more research. Early diagnosis and interventions can restore people to health, independence, and full lives.

Please send this message to your elected officials and, if you’re comfortable, tell your own personal story in the first block. Policy analysis is important, but personal stories are motivating, and lawmakers want to hear what’s really happening to people in their districts and states.