2017 RARE Patient Impact Grant Awardees

The RARE Patient Impact Grant Program offers…

RARECast: Moving Rare Disease Therapies from Hope to Reality
World Rare Disease Day, an annual international effort to create awareness for rare diseases, will take place on February 28th. This year,… Continue Reading
Emi Undiagnosed: Can You Help?
Emi was born on 7/17/13 with her intestines in her umbilical cord. We were told it was omphalocele, I was a patient at a high risk clinic… Continue Reading
Cambridge BioMarketing Campaign Raises Awareness for Rare Disease Research
Cambridge BioMarketing, the world’s leading rare disease and specialty communications agency, announced its #SupportTheSearch social media… Continue Reading
Sleeping Beauty: When Hypersomnolence and Narcolepsy Take Over
My symptoms started in high school. However, I feel like I showed emotional and behavioral symptoms before my more serious symptoms began. I… Continue Reading
When FAVA Isn’t Just a Bean: Living with a Fibro Adipose Vascular Anomaly
By: Dana Wolinsky When my son was four years old, he was given his first soccer jersey, specifically, a red Manchester United jersey bearing… Continue Reading
Finding Strength with Factor 5 Hemophilia
by Nabila Husseni I am a severe Factor 5 Hemophiliac living in Ahmedabad, Gujarat, India. My name is Nabila Husseni I’m a 30-year-old… Continue Reading
How I Survive with Two Rare Disease
by Joanna Tierno My symptoms started when I was about six months old with my first infection and a failure to thrive. As I grew, I had… Continue Reading