Looking for Other Patients with Cold Urticaria (Cold Contact Urticaria)


My name is Claire. I live in Cincinnati, OH. I found out i have a disease called Cold Urticaria (CU or Cold Contact Urticaria.) I found out that I had it about 4 years after my symptoms started showing up. I first noticed my hives […]

Becoming a Mum of a Child with Ebstein’s Anomaly and Double Orifice Mitral Valve


I gave birth to a handsome, long and healthy looking baby boy, he had bright blue eyes and a small amount of blonde hair. He was the son we had been waiting 9 months to meet, all the scans came back good and he looked […]

“The Challenge of Pain,” One Girl’s Story of RSD/CRPS and Gastroparesis

RSD/CRPS_ Gastroparesis

My daughter, Melanie is 13 and she’s a warrior; our Smiling Warrior. She has fought RSD/CRPS, a neurological dysfunction which causes chronic pain and other symptoms along with Gastroparesis (paralyzed stomach), syncope, fatigue, and general malaise for 3 1/2 years. Many doctors have listened and […]

A Life-Changing Privilege: Caring for a Child with Cornelia de Lange Syndrome


Kayla was born three months early in an emergency Cesarean section after she went into heart failure before birth. Doctors told me there was only a small chance she would survive the night, but she is a fighter. Doctors had seen birth defects early in […]

Hope for Aubrie Starr with Pulmonary Complications from Birth

"She is a little fighter and she will continue to fight everyday of her life."

Aubrie Starr was born Feb 12, 2013, as she took her first breathe her lung collapsed. She went straight to NICU. There they found she had pneumothorax, collapsed lung, respiratory distress syndrome, pulmonary hypertension, hypo-tension, anemia,  hydronephrosis, and sepsis. She was flown to Levines Children’s […]

Extra Digits on Hand at Birth and Increasing Appetite Later Discovered To Be Laurence Moon Syndrome

Carleigh was born with extra digits which was later discovered to be as a result of a rare genetic condition called Laurence Moon Syndrome.

Carleigh Haven entered our world on August 9, 2006 via C-Section. She was 6 lbs 13 oz and was 21 inches long. I had no complications throughout my pregnancy. When the nurses wheeled me back into my room, there sat Chad holding his beautiful baby […]

Southern California Rare Disease Advocates Meet To Share Information


On Thursday, May 31st, 2012, Global Genes our first RARE Meetup™ for South Orange County in Dana Point, California.  Patients and parent advocates met at Hennessey’s Restaurant to get acquainted and to share stories.  14 people, representing seven rare diseases and 10 rare disease foundations. […]