TOPIC: Featured News, Patient Stories, Rare Disease Day
A few weeks ago, we asked the community what some misconceptions were about living with a rare condition. The Mighty collected your responses and published them in the article below on February 28 for #RareDiseaseDay.
On World Rare Disease Day, groups and… Read More
TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day
The following story was submitted by Katia Luedtke in honor of Rare Disease Day. In this story, Katia shares her family’s journey of searching for and receiving a diagnosis for their son, Connor, of Snyder-Robinson Syndrome (SRS).
Share your story for Rare Disease Day here.
Our son Connor was diagnosed with Snyder-Robinson Syndrome (SRS) in… Read More
TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day
The following story was submitted by Sarah Stuker in honor of Rare Disease Day. In this story, Sarah shares her family’s journey of searching for and receiving a diagnosis for their daughter, India, of Spinocerebellar Ataxia.
Share your story for Rare Disease Day here.
This story is about our little girl, India, who will be… Read More
TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day
The following story was submitted by Lindsey McCarthy in honor of Rare Disease Day. In this story, Lindsey shares her family’s journey of receiving a diagnosis for their son, James, of a CNTNAP1 mutation. Read on to learn how the McCarthy’s have worked to find other families who are affected by this particular gene mutation and how… Read More
TOPIC: Advocacy, Featured News, Get Involved, Patient Stories, Patients & Members, Rare Disease Day
The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his family’s journey of receiving a diagnosis for their son, Archer, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a life-changing diagnosis, and how the Brazeau family was able… Read More
