NF Midwest is proud to collaborate with a network of dedicated organizations, from fellow NF groups to leaders in the rare disease space. These partnerships amplify our efforts, allowing us to provide better support, advocate more effectively, and foster a stronger community for everyone we serve.
NF Collective
NF Midwest is a founding member of the NF Collective, a group of neurofibromatosis organizations from across the country. By joining forces, we share resources and knowledge to ensure that individuals and families affected by NF receive the best possible support, no matter where they live.
National Organization for Rare Disorders (NORD)
NF Midwest is a member of NORD, a leading organization that provides advocacy, education, and research for all rare diseases. This partnership connects us to the broader rare disease community and strengthens our collective impact.
Global Genes
Global Genes is a leading rare disease advocacy organization dedicated to connecting and empowering patients, families, and advocacy groups worldwide. As a member organization, NF Midwest is part of a global network working collaboratively to advance awareness, education, and support for people affected by rare diseases.
The REiNS Collaboration
NF Midwest contributes to the global effort to find effective treatments for NF. Our staff actively participates in working groups within The Response Evaluation in Neurofibromatosis and Schwannomatosis (REiNS) Collaboration, an international initiative dedicated to improving clinical trials for NF.
Young Adult Leadership Partnership
Empowering the next generation of leaders is crucial. NF Midwest partners with The Littlest Tumor Foundation and Texas NF to provide a dynamic Young Adult Leadership Program, helping young people with NF build skills, confidence, and connections.
NF Advocacy Network
Our voice is stronger when we speak as one. Through the NF Advocacy Network, NF Midwest collaborates with other organizations to champion policies and research funding that benefit the entire NF community on a national level.
Defense Health Research Consortium (DHRC)
NF Midwest is a member of the Defense Health Research Consortium, supporting advocacy efforts to sustain federal funding for the Department of Defense’s Congressionally Directed Medical Research Programs (CDMRP), which include research relevant to neurofibromatosis.
Illinois Rare Disease Alliance
As part of Illinois Rare Disease Alliance, NF Midwest works alongside other patient advocacy groups to raise awareness and improve the lives of individuals and families in Illinois who are affected by rare diseases, including NF.