HNF successfully executed the Externally-led PFDD Meeting for the FDA on September 28th, 2018.
Author Archive
Courtney
How One Rare Disease Organization Used Technology to Provide Greater Patient Insight to FDA
Daniel Levine from Global Genes speaks with Allison Moore on the Global Genes Rare Cast.
CMT & Exercise: Made for Modus
Get the most out of your exercise! Join Estela and expert, Chris Dito (CMT patient and biomechanics specialist) as they discuss the dos and don’ts of exercising.
Join GRIN! About The Global Registry for Inherited Neuropathies
Help us to improve outcome measures, develop biomarkers and improve patient care by joining the Global Registry for Inherited Neuropathies
I Am Helena The Mermaid And I Have CMT Disease
I try to be a positive influence to others in wheelchairs or with disabilities, and hope I can share beauty and magic with those who need it most.
Author & Team CMT Founder Chris Wodke Releases Her Second Book
Author and Team CMT Founder Chris Wodke has released her second book, “Soup Sunday—A Journey to Healthy Living”.
Inspire Community
The INSPIRE App is live, and we’re sharing a behind-the-scenes look at how it works to improve the CMT Community!
Cannabis Community Care & Research Network (C3RN) Partners with HNF
Cannabis Community Care & Research Network (C3RN) is excited to be partnering with HNF to advance Cannabis research, advocate for patients in need, and educate the community!
HNF Presents at RARE Patient Advocacy Summit Hosted by Global Genes®
The Annual RARE Patient Advocacy Summit, hosted by Global Genes, is in its seventh year and will take place on October 3-4 at the Hotel Irvine in Irvine, California.
CMT6 (c12orf65) “One gene, two diseases”
C12orf65 can present as two different types of diseases called CMT6 and Leigh’s Syndrome. Both diseases are caused by dysfunction of mitochondria, the energy factory of our cells, and are progressive and, many times, devastating.
CMT&Me App Webinar
CMT&Me is an observational, non-interventional study, sponsored by Pharnext, to collect Real-World Evidence (RWE) from people living with CMT.
Jamal Hill ~ Paralympic Swimmer
We spoke with Paralympic swimmer, Jamal Hill about how he got started swimming, what it takes to make it to the Paralympics, his CMT journey and much more!
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Faces of CMT – Bernadette (9)
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Faces of CMT – HNPP Fund (3)
Faces of CMT – James (1)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (28)
GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
Living with CMT (78)
Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (3)
Clinical Trials (21)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (35)
Patience Resources (0)
Accessible Travel (4)
Bracing (11)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (1)
Genetic Testing (11)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (7)
Nutrition (3)
Occupational Thearpy (2)
Pain (8)
Podiatry (4)
PT and Exercise (25)
Research and Critical Trials (29)
School & College (6)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (1)
Pediatrics & CMT (10)
Registry (16)
Research (95)
School Outreach Program and Team CMT Kids (1)
Special Events (2)
Bike New York (19)
Other Events (4)
Spin-a-thon (7)
TCS New York City Marathon (7)
Team CMT Members (61)
The CMT Genie (6)
TRIAD (28)
TRIAD – Clinical Trial Readiness (5)
Vitaccess (1)
TRIAD – Research Gifts (0)
University of Helsinki (2)
Veneto (1)
TRIAD – Sponsored Research (0)
Burke Insitute (3)
University of Cambridge (1)
University of Miami (1)
University of San Antonio Texas (1)
TRIAD – Therapeutics (4)
Applied Therapeutics (10)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
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CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
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CMT Type – SORD Deficiency (9)
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