October is Kabuki Syndrome Awareness Month! And it's important to connect with other people in the community; there's always strength in numbers. So let's learn a little more about Kabuki syndrome…
Lindsey Sutton showed signs of familial chylomicronemia syndrome as early as five weeks old. Sutton is now 28 years old. Because of her condition, she must adhere to a very…
At 14 years old, Bede Marciari has experienced and missed out on a great number of things. For many people, this is just part of growing up. In Bede’s case,…
Linda Ramsey had a son named Kevin. In the beginning everything was okay, and Kevin grew normally for a short time. After a few months, his experienced difficulty swallowing. He…
According to a report by CTV News of Calgary, a new trial program is attempting to make transitions easier for people living with chronic conditions. Specifically, the program hopes to…
Tomorrow is World Scleroderma Day! This date is an opportunity for anybody with an interest in scleroderma to join together as one united voice to shine a spotlight on a…
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
A new clinical trial aims to be the first treatment for mitochondrial disease to be granted FDA approval. Whether or not the trial results in a landmark treatment, it is…
February is Eisenmenger Syndrome Awareness month. Eisenmenger syndrome is very rare and devastating, so it deserves our attention. Let's get to know a little more about this heart condition. Eisenmenger syndrome…
This week is Congenital Heart Defect Awareness Week! A congenital heart defect (CHD) is a problem in the heart's structure that occurs when a baby is born. Heart defects can range…
Love them, hate them, or love to hate them - celebrities are a big part of our culture. They sell us clothes, perfumes, lifestyles - and some we even elect…
According to Global Genes' Rare Daily, Alexi’s mother always knew her child was different. It would take almost nine years to find the proper ADNP diagnosis, but Alexi’s mother never gave…
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