hnf on the road

HNF On The Road

by | Dec 14, 2018 | 0 comments

HNF On the Road


Rare Disease Week on Capitol Hill

February 2018, Washington, DC  

  • HNF team and 10 CMT patients/caregivers participated in meetings with 12 Congress officials to inform them about Charcot-Marie-Tooth

Learn more here:


American Academy of Neurology Annual Meeting

April 2018, Los Angeles, CA  

  • Conducted important meetings with leading CMT stakeholders to enhance HNF’s programs  
  • Identified additional clinical sites to participate in the Pharnext PXT3003 Pediatric Trial to launch early 2019


Rare Patient Advocacy Symposium in Partnership with Penn Medicine Orphan Disease Center and Global Genes

May 2018, Philadelphia, PA

  • Allison Moore, a Rare Disease thought leader presented on “Patients as Key Opinion Leaders and Partners In Research and Clinical Development.” The presentation highlighted the vital role that patients play in the development of drugs and treatments for the CMT community


BIO International Convention

June 2018, Boston, MA  

  • Hosted by the Biotechnology Innovation Organization (BIO). BIO represents more than 1,100 biotechnology companies, academic institutions, state biotechnology centers and related organizations globally  
  • For the fourth year, HNF was invited to participate in the Patient Advocacy Pavilion to explore new TRIAD partnerships


Peripheral Nerve Society (PNS) Annual Meeting

July 2018, Baltimore, MD  

  • HNF was an exhibitor and connected with attending CMT physicians, researchers and partners from all over the world  
  • James Nussbaum, PT, PhD, SCS, EMT, oral poster, “Functional Improvements in Patients with CMT participating in Skilled Physical Therapy: A Retrospective Analysis”, in collaboration with HNF and the AlterG, was selected for display


HNF was honored to be chosen to present at two sessions at Global Genes Annual RARE Patient Advocacy Summit

October 2018, Irvine, California.  

  • Session – Architecting Your Disease Community HNF Advocacy Director Joy Aldrich moderated the session with Allison Moore, CEO of HNF and Jill Jarecki, PhD and CSO of Cure SMA, on challenges and benefits of engaging in the effort to help FDA and other stakeholders in understanding the patients’ disease experience to accelerate therapy development.  
  • Closing Session – Data and Technological Innovation Allison Moore, CEO of HNF presented along with Scott Schliebner, VP Scientific Affairs, PRA Health Sciences, a leading CRO company, to close the meeting on the importance of utilizing innovative technology (Voice Activated Technology and conducting virtual clinical trials) and how these technologies will improve drug discovery, clinical trials design and the acceleration of patient screening and recruitment.


Peer Support Boot Camp hosted by Child Neurology Foundation (CNF)

October 2018, Irvine, CA.  

  • HNF continues our collaboration with the CNF and the Family Support & Empowerment Program (FSEP) to bring peer support to the CMT caregiver community. Stay-tuned!


HNF Hosted CMT Symposium at the annual American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM) Conference

October 2018, National Harbor, MD

  • A 90-minute educational session moderated by Estela Lugo, HNF Medical Outreach Director featured a panel of experts with insight on the importance of Patient Reported Outcomes in new technology, genetic testing, therapy development, patient care, and Healthcare Provider networks.
  • Panelists included: Mark Larkin, PhD, Vitaccess Founder, Andrea Paal, MS, CGC, Athena Diagnostics, Florian Thomas, MD, MA, PhD, MS, Chair of the Neuroscience Institute and the Department of Neurology, and Director of the Hereditary Neuropathy Foundation Center of Excellence at Hackensack University Medical Center, Jahannaz Dastgir, DO – Pediatric Neurologist at Atlantic Health, James Nussbaum, PT, PhD, SCS, EMT, founder and director of ProHealth & Fitness.


Watch our AANEM full presentation click here:

We are proud to announce that HNF’s AlterG Anti-gravity Clinical Study Principal Investigator Dr. Nussbaum received a President’s Research Initiative Award at the AANEM.

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