Above:  kids with Aspartylglucosaminuria

We need your help paying for the life-saving drug ! 

Aspartylglucosaminuria (AGU), is a rare and fatal disease that currently has no treatment. Rare Trait Hope Fund is dedicated to find a treatment for this disease, but without your help, the kids with AGU are destined to die.

Total cost of drug manufacturing and testing is US$ 5,824,600. We already paid over 70% . We need your help to pay off the drug and give it to AGU kids. 

Please donate directly on the website or through GoFundMe in the United States, Canada, Switzerland, or Australia. 

STILL NEED - US$ 1,727,000

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Europe

Canada 

Donate to Help Us Provide a Cure

Our Beginnings

In 2012, brothers Daniel and Alexander were diagnosed with a rare fatal disease called Aspartylglucosaminuria (AGU) and given 10-15 years to live. We began to investigate what could be done to save the boys.  

A few months later we met the parents of Hermance,  who had received the same devastating diagnosis. We collaborated to organize and fund the research community that would develop the treatment for this disease. 

Since then, we've met parents from around the world who are fighting to save the lives of their children.  Below are the stories of some of the kids who are desperately waiting for a treatment. Their time will be cut short if we can't raise enough money to deliver their cure. 

We have funded all the required studies to start the clinical trial to treat the kids with AGU. We just need your help to get us over the goal line to save these kids! 

Patients? No, just kids

What is Aspartylglucosaminuria?

Aspartylglucosaminuria (AGU) is a rare genetic lysosomal disorder, that slows development in childhood. In primary and middle school, kids with AGU are often diagnosed with Autism. What differentiates AGU from typical cases of Autism are its range of other negative health effects and the fact that it's severity worsens over time. 

Globally, about 150 children and young adults have Aspartylglucosaminuria (AGU). AGU produces some of the most kind, sweet, honest, and helpful people ever!  Unfortunately, it also slowly takes their lives away. 

AGU has been well-described and documented since its discovery in the 1960's, but to this day there is no established cure. The final step is to MANUFACTURE THE CURE.

Curing Aspartylglucosaminuria

Symptoms of the disease, does my child have AGU, how to get tested and treatment 

Many AGU patients are receiving chaperone therapies . These therapies can be applied to different diseases. 

Symptoms of the disease, does my child have AGU, how to get tested and treatment

Information about the disease, differential diagnosis, disease progression, etc.