The History of HNF
Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures.
HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) as a collaborative effort with academia, government, and industry to develop treatments for CMT. Currently TRIAD involves many groups that span the drug discovery, drug development, and diagnostics continuum. The TRIAD Council is comprised of CMT thought leaders, experts, and consultants engaged in collaborative planning and decision-making to provide regular guidance and direction to our research strategy.
As part of TRIAD, in 2013, the Global Registry for Inherited Neuropathies (GRIN) was developed to conduct patient-focused research and development for treatments and cures. The patient voice is at the forefront of all we do. By incorporating the patient voice from the beginning, our research programs have the greatest potential for success.
In accordance with the FDA’s patient-focused drug development guidance for enhancing the incorporation of the patient’s voice in medical product development and regulatory decision making, HNF has developed a regulatory strategy to engage with industry early on to assist with collecting and submitting robust and meaningful patient experience data, and other relevant information from patients and caregivers, such as identifying what is important to patients.
The HNF-hosted, externally-led Patient-Focused Drug Development (El-PFDD) meeting continues to support industry and stakeholders as they develop their therapies and prepare for clinical trials.
HNF is actively committed to increasing awareness and accurate diagnosis of CMT and providing patients and families with critical information to improve quality of life.
Major projects include:
- The CMT Genie
- Global Registry for Inherited Neuropathies (GRIN)
- Externally-led Patient Focused Drug Development Meeting
- Movement is Medicine™
- Centers of Excellence
- Production of the documentary “Bernadette“
- Publication of a series of children’s books, Arlene On the Scene and Arlene the Rebel Queen
- Supportive patient resources
- Quarterly CMT Update Newsletters
- and more!
We provide a strong, organizational voice to those living with CMT all over the world!
The Future of CMT Research