by Kristy Miller | Mar 6, 2023 | 8p, Advocacy, Awareness, CHARGE, Hydranencephaly, IGF-1R, Joubert Syndrome, Kabuki, Noonan Syndrome, Smith-Kingsmore, Syndrome
February 28th is Rare Disease Day. It is a day that brings awareness to the over 30 million people in the US and over 300 million people worldwide living with a rare disease. A rare disease in the United States is defined as one that affects less than 200,000 people....
by Kristy Miller | Mar 1, 2022 | 8p, Advocacy, Awareness, CHARGE, Family, Kabuki, KAT6A, Smith-Kingsmore, Syndrome
Today is a day that we can highlight all of our a unique and brave kiddos with uncommon diagnoses. Today is #RareDiseaseDay. These kiddos fight to be known in a way that most of us will never know. They are born or develop conditions that start as mysteries to the...
by Kristy Miller | Feb 8, 2022 | 8p, CHARGE, Kabuki, KAT6A, Occupational Therapy, Physical Therapy, Smith-Kingsmore, Speech Therapy, Syndrome
This time of year you may start seeing posts about kiddos with diseases, disorders, and syndromes you have never heard of. Things like Kabuki, Smith-Kingsmore, KAT6A, 8p, CHARGE. What connects all of these names and why are we hearing about them now? Well, February 28...
