I am attending HNF’s “Voice of the Patient” Weekend 2018 to tell the FDA and other stakeholders how TRPV4 HN impacts my life.
Author Archive
Courtney
Catching up with Team CMT Member Katherine Crandall Symons
HNF catches up with Team CMT Member Katherine Crandall Symons
HNF’S Board is Growing!
HNF is excited to announce the addition of four new board members to our team!
Meet Dr. Raghav Govindarajan MU Health Care
We caught up with Dr. Govindarajan, board certified neuromuscular physician at University of Missouri, to discuss his multifaceted approach to treating CMT.
Designing a Better Grip Active Hands Q&A with Rob Smith
When we learned of Rob Smith’s story, and how his line of gripping aids came to be, we knew it was one worth sharing.
Traveling With A Disability
We interviewed Bernadette to ask her to share her tips and tricks for traveling with a disability.
Meet Alana Kessler, MS RDN E-RYT: Nutritionist, Dietitian & Wellness Expert
Are all of your CMT symptoms really CMT symptoms?
Meet Lainie Ishbia Speaker – Behavioral Health & CMT
Meet Lainie Ishbia who will be speaking during the Voice of the Patient Weekend about behavioral health & CMT.
Meet Linda Crabtree: Author of “CMT and Me”
An intimate 75-year journey of love, loss and refusal to surrender to a disabling disease.
Panetta Physical Therapy Webinar
Join us for an introduction to Physical Therapy.
Global Genes To Host The 2018 RARE Patient Advocacy Symposium
Global Genes, in partnership with the University of Pennsylvania School of Medicine Orphan Disease Center, will host the 2018 RARE Patient Advocacy Symposium in Philadelphia on May 19th, 2018.
HNF’s Landmark Externally-Led Patient-Focused Drug Development Meeting
HNF will be holding a landmark externally-led Patient-Focused Drug Development Meeting for CMT and INs in Washington, D.C. on Friday, September 28, 2018.
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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 (3)
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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