Register for Info Session to Learn More

Collecting data is an essential first step on a rare disease research journey and an important way for patients and their caregivers to contribute to advancing care for their communities.

On a recent family call, Dr. Nicole Wolf, one of the world’s leading clinician scientists of 4H/POLR3-related Leukodystrophy spoke to the importance of data collection. She mentioned that this data informs the natural history of a disease and can be helpful in several ways, including:

• Counseling families what to expect of the disease
• Understanding the basic disease mechanisms
• Evaluating the effect of treatments
• Quickly identifying possible clinical trial candidates

Launching on June 21st, the Yaya Foundation is excited to announce a new 4H/POLR3-related Leukodystrophy Data Collection Program (also called a disease registry). The Foundation has partnered with leading rare disease data collection experts RARE-X.

To learn more about the Data Collection effort and benefits, please register for an upcoming Information Session on June 16^th.

To hear more from Dr. Wolf on the importance of data collection, you are invited to watch her presentation on this topic: