…Foundation, Roundtable discussions & Feedback Sharing 10:45 – 11:00am Break 11:00 – 12:15pm Panel Discussion: Innovating Digital Endpoints with Wearable Technology The identification and development of digital measures are vital…
Search Results
Results for "feed"
Treating Children with Charcot-Marie-Tooth: Surgery
…a pencil or a spoon. Can they feed themselves? Will they be able to get dressed independently? A big mistake is to focus only on one aspect (such as the…
GAN – Giant Axonal Neuropathy
…hair. As the disorder progresses, patients become quadriplegic, dependent on a feeding tube and ventilator before dying typically in the second or third decade. HNF Research Initiatives Natural History Studies…
Voice of the Patient Weekend: Expanding the Science of Patient Input in Drug Development and Tapping into Personal Potential
…ways in which patients treat and manage their CMT (symptoms) and the decision factors that they take into account when choosing a treatment. This feedback will, in turn, inform the…
Introducing the New Helios GX with Monica Tullar
…tips and will be sharing them on Ortho Rehab Designs’ YouTube channel, along with feedback on my continued efforts to find the limitations of this new Helios GX. Stay Tuned!…
Hypotonia & CMT
…PMP22 but also other genes). It could be mistaken for Potocki-Lupski syndrome phenotype which presents with weak muscle tone (hypotonia) and swallowing difficulties (dysphagia) that lead to feeding problems, slow…
CMT Biobank: We Need Your HELP!
…group that gives access to these patient samples at minimal cost. The locations for specimen collection are currently being discussed. Please give us feedback if you would like us to…
A Successful Movement is Medicine™ Summit
…for the Movement is Medicine™ Summit. We are grateful to all the patients who participated in this groundbreaking event! The wonderful feedback we have received makes all of the hard…
How One Rare Disease Organization Used Technology to Provide Greater Patient Insight to FDA
…joining forces with a technology company, HNF was able to gather patient feedback using voice technology, allowing patients to give their comments over the phone through a simple automated system….
Addie’s Tale
…in the live camera to give instant feedback on quality of photos and videos. With the CMT Mobile App, patients will be directed to use the Foot Calculator to capture…
Em-bracing Fashion with Lainie Ishbia
…daily with either awesome feedback and/or questions. It feels amazing to have created something that was clearly needed. What are your future goals for Trend-ABLE? Right now, I am focused…
Hope for the Future for Owen
…a semi-clenched position, therefore making it difficult for him to write, feed and dress himself, among other issues. He also has sensory issues, which vary day to day. Although Owen…
Categories
Advocacy (10)
Awareness (42)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (63)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (11)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (4)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (3)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (5)
Webinars – Nutrition (3)
Webinars – Pain (5)
Webinars – Podcasts (3)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (14)
Webinars – School and College (5)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (7)
Emerging Technologies (1)
Faces of CMT (2)
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 (2)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (49)
Gene Therapy (1)
GRIN Patient Registry (46)
HNF Team (10)
Industry (6)
Living with CMT (89)
Media (1)
Medical professionals (3)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (11)
Clinical Trials (24)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (37)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (3)
Genetic Testing (12)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (11)
Nutrition (5)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (26)
Research and Critical Trials (41)
School & College (8)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (6)
Pediatrics & CMT (13)
Registry (19)
Research (106)
School Outreach Program and Team CMT Kids (3)
Special Events (3)
Bike New York (21)
Other Events (5)
Spin-a-thon (7)
TCS New York City Marathon (9)
Team CMT Members (64)
The CMT Genie (6)
TRIAD (31)
TRIAD – Clinical Trial Readiness (6)
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 (12)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (25)
CMT Type – CMT1B (5)
CMT Type – CMT1X (6)
CMT Type – CMT2A (13)
CMT Type – CMT2C (6)
CMT Type – CMT4A GDAP1 (4)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (4)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (12)
Upcoming Events (2)
Ways to Give (7)
Awareness (42)
Centers of Excellence (13)
CMT (2)
CMT en Español (1)
CMT Summit (63)
CMT Update (74)
CMT-Connect (29)
CMT-Connect Webinars (11)
Webinars – Accessible Travel (3)
Webinars – Adaptive Driving (2)
Webinars – Bracing (2)
Webinars – Breathing (1)
Webinars – Canine Companions (1)
Webinars – Cannabis (4)
Webinars – Dating and Relationships (3)
Webinars – Family Planning (1)
Webinars – FEATURED (7)
Webinars – Genetic Testing (3)
Webinars – Home Accessibility (2)
Webinars – Inclusive Employment (3)
Webinars – Inspire Community (1)
Webinars – Legal Rights and Benefits (3)
Webinars – Newly Diagnosed (5)
Webinars – Nutrition (3)
Webinars – Pain (5)
Webinars – Podcasts (3)
Webinars – PT and Exercise (9)
Webinars – Research and Clinical Trials (14)
Webinars – School and College (5)
Webinars – Surgery (2)
Webinars – Telemedicine (1)
Webinars- Emotional and Mental Health (5)
Community (7)
Emerging Technologies (1)
Faces of CMT (2)
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 (2)
Faces of CMT – Jaxson (7)
Faces of CMT – Zach (18)
Featured (49)
Gene Therapy (1)
GRIN Patient Registry (46)
HNF Team (10)
Industry (6)
Living with CMT (89)
Media (1)
Medical professionals (3)
Movement Is Medicine (17)
Optic Hereditary Neuropathy (5)
Our Impact (11)
Clinical Trials (24)
PFDD (1)
PFDD Meeting 28SEP2018 (5)
Past Events (37)
Patience Resources (0)
Accessible Travel (4)
Bracing (12)
Breathing (3)
Canine Companions (5)
Cannabis (8)
Caregivers (3)
Dating and Relationships (7)
Emotional and Mental Health (9)
Family Planning (1)
Fashion and Products (3)
Genetic Testing (12)
Home Accessibility (2)
Inclusive Employment (3)
Inspire Community (7)
Legal Rights and Benefits (8)
Neurotoxic Drugs (4)
Newly Diagnosed (11)
Nutrition (5)
Occupational Thearpy (2)
Pain (8)
Podcasts (2)
Podiatry (4)
PT and Exercise (26)
Research and Critical Trials (41)
School & College (8)
Surgery (10)
Telemedicine (1)
Tips and Hacks (2)
Patient-Focused Research (6)
Pediatrics & CMT (13)
Registry (19)
Research (106)
School Outreach Program and Team CMT Kids (3)
Special Events (3)
Bike New York (21)
Other Events (5)
Spin-a-thon (7)
TCS New York City Marathon (9)
Team CMT Members (64)
The CMT Genie (6)
TRIAD (31)
TRIAD – Clinical Trial Readiness (6)
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 (12)
Pharnext (10)
Rarebase (4)
Types of CMT (1)
CMT Type – CMT1A (25)
CMT Type – CMT1B (5)
CMT Type – CMT1X (6)
CMT Type – CMT2A (13)
CMT Type – CMT2C (6)
CMT Type – CMT4A GDAP1 (4)
CMT Type – CNTNAP1 (1)
CMT Type – GAN (5)
CMT Type – HDAC6 (1)
CMT Type – HNPP (4)
CMT Type – MTRFR-C12orf65 (6)
CMT Type – SORD Deficiency (12)
Upcoming Events (2)
Ways to Give (7)
Recent Comments