Where Do Rare Genomics Funds Go?
Donated funds go directly to supporting patient-specific research.
We are a nonprofit organization, funded primarily through the generosity of donors who believe in our cause. Donated funds go directly to supporting patient-specific research. We also raise funds through other means, such as grants from academic institutions, foundations, private donations, and other financial sponsors. We are incredibly thankful to everyone who has given us their support and made it possible for us to do what we do.
For ever dollar you donate to Rare Genomics that value is increased 75 times due to the work of our volunteers.
To date, Rare Genomics has helped over 250 families. In 2013, 83% of patients working with Rare Genomics who could not receive insurance coverage or obtain grant funding chose to crowdfund the cost of DNA sequencing. All Rare Genomics families who started crowdfunding reached their goal and 64% of families exceeded their crowdfunding target goal.
Successful Rare Genomics Patient Crowdfunding Campaigns
Daniel is a beautiful, blond 2 years old girl. Daniel smiles a lot and when she is in a room she lights it up.
Pain - A great protective mechanism a human can have. Imagine if you get hurt and don’t feel it. Imagine even when you break a bone and still do not feel it. Imagine on a warm sunny day, you are walking on the beach, your body warms up but your body doesn't sweat to cool itself down.
Windsor is a beautiful 23 month old girl who loves music and loves to play! If I could tell you only one thing about her, I'd tell you she never EVER gives up. Windsor has a muscle condition called hypotonia. When she was born, she was too weak to move her little body at all.
Maya is a silly, cuddly three and a half year old girl. Like others her age, she loves to read books, paint, and play with her dog... but unlike others her age, she has a host of issues that leave her unable to speak, run , or climb stairs.
Balazs is a 6 year old, very cute, mischievous little boy. Around the age of 9 months he started to have really bad seizures. His lips turned purple and he was not breathing! It was frightening to see it happening to your child and being not able to help him to breathe!
Gavin is a 39 year old man who has been living with an excruciatingly painful disease for 20 years. Gavin woke up one morning and found he had extreme spasm like sensations in his throat. It is as if it came out of nowhere. For that first year he had difficulty talking.
Sabrina is a beautiful ten year old, who is having a hard time understanding why she cannot do the things her friends have no problem with. Sabrina likes to write stories and draw pictures, but it is getting difficult for her to write and draw.
Our son Gram is a sweet and chunky little guy who loves to play with his older brother and sister and dance in his own unique way. He is the youngest of three and has a kind-of go with the flow attitude.
Three-year-old Harel was born with defects in multiple organs of his body, including the lungs, heart, lower limbs, and more. Harel has undergone several surgeries and now has mainly linguistic and motor disabilities and a short stature.
Noa is a 4 year's old beautiful curly haired girl. Noa suffers from an undiagnosed developmental delay. She is unable to walk and speak, her muscles are partially low and high toned and she has difficulties in planning her movements.
Annaston was our first and only child...It was not until, the day after she was born that the Drs noticed something was wrong...My world was turned upside down from that point forward. An x-ray was taken to show that her stomach was not connected to her intestine.
Even though Robert is confined to a wheelchair and fed through a tube, he is a fighter. We're proud of his love for life and his great sense of humor.
Dana has a beautiful appearance of a healthy child. Today, at the age of 5 Dana does not walk or speak. She can neither reach nor hold any object. Dana requires full time assistance throughout the day.
Skyler wears a holtier monitor for irregular heart rate, suffers from behavioral issues and often crippling hip and leg pains. He has seen a number of physicians, including specialists in Cardiology, Gastroenterology, Neurology, Endocrinology, and Psychiatry.
Joaking was a normal child until age 3, playing, jumping, climbing ladders, running. I would scratch his face lovingly and this affectionate moment made us both very happy. That is when suddenly something happened...