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!
Blog Archive
Blog
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.
Thank You and Congratulations To Team CMT Riders
On May 6, 2018, Team CMT conquered 42 miles of the TD Bank Five Boro Bike Tour through each of Manhattan’s five boroughs!
Why I’ll be attending the “Voice of the Patient Weekend” A Patient’s Perspective
I am attending HNF’s “Voice of the Patient” Weekend 2018 to tell the FDA and other stakeholders how TRPV4 HN impacts my life.
Catching up with Team CMT Member Katherine Crandall Symons
HNF catches up with Team CMT Member Katherine Crandall Symons
Dr. Lucia Notterpek to Take the Reins as HNF’s New Chief Scientific Officer.
HNF is excited to announce that Dr. Lucia Notterpek will Take the Reins as HNF’s New Chief Scientific Officer.
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.
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Faces of CMT – HNPP Fund (3)
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Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
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GRIN Patient Registry (39)
HNF Team (10)
Industry (3)
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Medical professionals (2)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
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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)
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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)
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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)
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CMT Type – HDAC6 (1)
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CMT Type – SORD Deficiency (9)
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