I am a Rare Mom! I love that term, because it covers so many different parts of my life. I’m unique, an individual, a working mom, and I’m also a…
Strapped for cash after a cystinosis diagnosis? Listen to this! There is a scholarship available to lighten the load of families who are dealing with the challenges that accompany cystinosis.…
El 7 de junio de 2015, miles de personas salieron a las calles a través de Canadá en el Paseo anual para poner fin a la artritis. Una causa principal…
Ankylosing spondylitis is a rare, autoimmune disorder. It is a chronic form of inflammatory arthritis that primarily affects the base of the spine, bones and joints. It has also been referred…
Living with a chronic health condition that dramatically alters one’s life can be very confusing, scary, and lonely. I lived in this mental misery for years when I developed dystonia,…
Michael J. Fox was the known for years as the teenage financial wizard on the television series, Family Ties. Later he went on to become a time traveling teen in…
This article is the first in a series written by Carolina, Mariana's mother. Carolina hopes that sharing their story will increase awareness. Ever since Mariana was born, her life has…
The steely visage of our seventh president Andrew Jackson will disappear from the face of the $20 bill. Yes, “Old Hickory” has been fired from top billing on the venerable $20 note…
My name is Rob. I’m originally from Miami, Florida, born and raised, moved out of there back in 1981 and joined the Navy; spent 20 years on active duty. Transitioned to…
As you know, May is Lyme Disease Awareness Month and we encourage you to participate! One of my favorite ways to get involved is doing the Lyme Disease Challenge. I took…
Psiquiatra Dr. Jennifer Pate, de 47 años, recibe infusiones intravenosas de inmunoglobulina que salvan vidas cada tres semanas. Esto no es por elección, porque sin ellos, su sistema inmunológico está…
Nutrition and exercise are vital to better health and wellness. Still, getting back into the gym with a rare disease is tough. Staying fit and working out can be so challenging post…
When you’re a rare mom your diagnosis isn’t always figured out and so in between trying to raise your children, you’re going to doctors and medical centers and trying to…
It's that time of year, again, folks. Yep, it's time to CHECK FOR TICKS! These tiny little predators can pack quite a wallop if you get hooked up with the…
I am a rare mom. For those that don’t know what that means, rare moms are the silent heroes of the world parenting to the best of their abilities with…
Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you…
I am the mom to a 12 year old with Albrights Hereditary Osteodystrophy, AHO. According to the Genetic and Rare Disease Center, GARD, AHO is a rare metabolic syndrome created…
Have you ever been worked by your job so hard that you think "I need a vacation!"? I know I have. Have you ever been worked so hard by your…
¿Te has preguntado qué se siente tener la Enfermedad de Inmunodeficiencia Común Variable (ICV)? Este video explora la vida del día a día desde el punto de vista de Keith…
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