NF Midwest Participates in the 2025 REiNS Collaborative Meeting 

The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Collaborative is an international effort to develop new standardized response criteria for determining treatment response in patients with NF1, NF2, and schwannomatosis. 

In 2011, a team of neurofibromatosis clinicians and researchers formed a working group called Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS). Spearheaded by Dr. Scott Plotkin (MGH) and Dr. Brigitte Widemann (NCI) and first convened in June at the Children’s Tumor Foundation 2011 NF Conference, around 30 leading NF clinicans and researchers participating in the REiNS met in Boston to continue their planning and discussions. 

This group brings researchers, clinicians, and advocacy partners together to create shared approaches that support better care and better science. 

In early December, members of the collaborative met in person in Baltimore, MD. These meetings help advance the work that shapes how NF and schwannomatosis are studied and understood. 

NF Midwest was present and engaged. 
NF Midwest helped to send two patient representatives. While usually attending in person, Diana attended virtually this year. Being in these rooms matters, and the support of our community helps make that possible. When NF Midwest attends, we bring the needs of our collective families in our region forward and help contribute to efforts that influence trials, treatments, and care. 

We’re also proud that Diana Haberkamp, executive director of NF Midwest, has served on REiNS for the past ten years. Her involvement helps keep the patient voice involved in the development of shared tools and standards. 

NF Midwest is honored to be part of the broader NF community working to move care and research forward. Participation in collaborations like REiNS helps us stay connected, informed, and active in work that benefits the families we serve. 

If you’d like to learn more about REiNS and how you can participate please email Diana.