FAMILY NETWORK
Is your loved one is affected by Jamuar syndrome?
You might feel overwhelmed, even hopeless. You might have trouble sleeping at night wondering what the future holds.
You crave treatment that will help your child flourish. You might wonder if there is anything you can do to help such treatment exist.
Yes, there is.
You have knowledge.
You have medical records.
You have personal experience.
And you have a voice.
The scientific community can’t develop therapies without understanding the patients. And they won’t develop therapies if patients aren’t coming together and asking for them.
You can make a difference by sharing your loved one’s medical story. The UGDH Foundation exists to make that easy for you.
We’re forming the TUF Family Network so you can be the first to know about scientifically useful and appropriate ways to share patient data. We can also put you in touch with other families in the network if you desire.
To be clear, rare disease research is a long game. The process will feel achingly slow. But we hope our work will make possible what would otherwise be impossible.
To join the The UGDH Foundation's family network, please drop us a line.