True Reply’s Voice Activated Technology is an accessible and innovative new platform that captures the patient’s experience with CMT in their own words.
Blog Category
Research
Total posts in Category: 95
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.
HNF Joins Inherited Neuropathy Consortium
HNF would like to announce, with great pleasure, that it has been invited to participate in the Inherited Neuropathy Consortium (INC), one of 22 groups under the Rare Diseases Clinical Research Network.
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 to Host Educational CMT Symposium at AANEM Annual Conference
HNF to host an educational CMT symposium at AANEM’s Annual Conference October 10-13th in Washington, D.C.
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.
Allison Moore Speaker at 2018 Rare Patient Advocacy Symposium
On May 19, HNF participated in the Rare Patient Advocacy Symposium in partnership with Penn Medicine Orphan Disease Center and Global Genes.
Neurology Reviews® & NORD Publish 2018 Rare Neurological Disease Special Report
The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD.
$200,000 In Donations From True Reply Supports CMT Research
True Reply and HNF have collaborated to enhance patient focused research and knowledge of what matters most to patients living with CMT.
StarWise Therapeutics LLC & HNF Join Forces for Treatment of CMT2A
StarWise Therapeutics LLC & HNF join forces to expedite the advancement of a new drug entity to the clinic for the treatment of CMT2A.
Muscle Cramp Study Underway
In October 2017, Flex Pharma initiated a Phase 2 study of CMT, referred to as the COMMIT study.
Exciting Corporate News: Invitae, A Genetic Information Company, Acquires AltaVoice
Invitae, A Genetic Information Company, Acquires AltaVoice, HNF’s Global Registry for Inherited Neuropathies (GRIN) Platform Host
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Awareness (34)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (53)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (10)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (1)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (3)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (6)
Webinars – Genetic Testing (1)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (2)
Webinars – Nutrition (1)
Webinars – Pain (5)
Webinars – Podcasts (1)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (9)
Webinars – School and College (4)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (4)
Emerging Technologies (1)
Faces of CMT (1)
Faces of CMT – Addie (2)
Faces of CMT – Bernadette (9)
Faces of CMT – CMT4A (7)
Faces of CMT – Grace (18)
Faces of CMT – HELP Fund (8)
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)
CMT Type – CMT1A (22)
CMT Type – CMT1B (2)
CMT Type – CMT1X (3)
CMT Type – CMT2A (9)
CMT Type – CMT2C (5)
CMT Type – CMT4A GDAP1 (3)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (3)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (9)
Upcoming Events (3)
Ways to Give (4)
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