We're coming up on
Rare Disease Day - appropriately on February 29th! Fighting a disease is hard, but fighting a rare disease comes with it's very own set of hurdles. I'm sure we have all come across therapists, doctors, specialists and teachers who are well versed in special needs and childhood diseases, but have never heard of Rett Syndrome.
I imagine we have all gotten the "what? did you say Tourette Syndrome?" at least once or twice in our lives. These are definitely unique challenges that people with, say, Diabetes or any other well known disease don't have to deal with. We can explain our daughter's condition, and hand out a
Purple Card, and feel a little better knowing we have at least spread awareness.
Unfortunately the hurdles don't end there. Many times rare disease have medications, testing and therapies that are difficult to fund but are desperately needed. We have to travel further --sometimes across the state-- for specialists and treatment. These costs add up quickly, too quickly, and can make even a financially strong family feel the pinch.
Thankfully there are organizations like the National Organization for Rare Diseases (NORD) that understand the financial strain of a rare disease and is working to help families get the care they deserve.
NORD lists several resources on their website, and has a Patient Assistance Program that can help pay for specific medications, testing, co-pays, insurance premiums, travel expenses and consultations with specialists that may not have otherwise been picked up by insurance. Of course you do have to qualify and then apply for assistance. Check out all the details on the
NORD website here.
It can be very lonely, consuming and expensive to live with a rare disease, but it's so nice to know that organizations like this exist and are trying to make life just a little easier for us! Thank you NORD!
Bridget
RettGirl.org
