The Arkansas Chapter supports the Children's Tumor Foundation in their efforts to build the NF Registry. If you or your child have NF1, NF2, or schwannomatosis, we need your help building NF “patient power.” The NF Registry was started by the Children’s Tumor Foundation in 2012 to do the following:
- Let people know about new clinical trials (new potential treatments) for NF
- Provide patients with facts and figures about the NF community as a whole
- Learn how NF changes over a person’s lifetime
- Help researchers understand what makes one person’s symptoms different from another's
- Better inform qualified NF researchers from all over the world about issues people with NF care about most
The Registry now has over 7,000 participants, but needs your help to continue to grow and make a greater impact on the well-being of individuals living with NF.