Associated tags: Research, Health, HNF, Genetics, Patient, Charcot–Marie–Tooth disease, Pharmaceutical industry, Drug discovery, CMT, Chronic pain, Muscle atrophy, FDA, Confusion, Acupuncture & Electro-Therapeutics Research, Insurance, Hypoesthesia, Digital, Genetic counseling, Scene, LCGC
Health,
Genetics,
Other Science,
General Health,
Research,
Science,
Biotechnology,
CMT,
Neurotoxicity,
HNF,
Genetic testing,
Gene,
Vitamin,
Industry,
Drug discovery,
Mental health,
Precision medicine,
CEO,
Diagnosis,
Cedars-Sinai Medical Center,
Research,
Pain,
Goldman Sachs,
Occupational therapy,
Peripheral neuropathy,
Government,
Human,
Health,
Patient,
Quality of life,
Sensation,
Education,
Partnership,
Drug development,
Awareness,
Rock Health,
Fenwick & West,
Confusion,
Acupuncture & Electro-Therapeutics Research,
Genetics,
Insurance,
Hypoesthesia,
Digital,
Scene,
Genetic counseling,
LCGC,
Charcot–Marie–Tooth disease,
Medicine,
Vaccine,
Pharmaceutical industry The CMT community has historically lacked education and resources around the importance and availability of genetic counseling, genetic testing, clinical trials and research participation.
Key Points:
- The CMT community has historically lacked education and resources around the importance and availability of genetic counseling, genetic testing, clinical trials and research participation.
- These providers are often hesitant to pursue genetic testing, due to a perceived lack of approved treatments and discomfort surrounding test ordering and interpretation.
- Through the CMT Genie Project, genetic counseling will be offered to participants at a reduced price, and the genetic counselor will help participants choose the most cost-effective genetic test that meets their needs.
- For so long, theres been significant confusion around why and how to get genetic testing for CMT, says Allison Moore, founder and CEO, HNF.
Retrieved on:
Tuesday, October 12, 2021
Nerve Damage,
Drug discovery,
Program,
Chronic pain,
Neuron,
Entrepreneurship,
FDA,
Charcot–Marie–Tooth disease,
HNF,
CEO,
Founder,
Muscle atrophy,
Partnership,
Patient,
Disease,
Research,
CMT,
Pharmaceutical industry Rarebase is a public benefit biotechcompany focused on accelerating therapy development for rare diseases with its tech-enabled drug discovery platform called "Function".
Key Points:
- Rarebase is a public benefit biotechcompany focused on accelerating therapy development for rare diseases with its tech-enabled drug discovery platform called "Function".
- Rarebase will screen a compound library of thousands of FDA-approved drugs and novel drugs, targeting ten subtypes of Charcot-Marie-Tooth (CMT).
- If such treatments are out there for CMT, we will find them," said Onno Faber, Co-Founder and CEO of Rarebase.
- We believe the Rarebase partnership will enable FDA approved drugs for clinical use for CMT.
Retrieved on:
Friday, September 3, 2021
Patient,
IRB,
CMT,
Awareness,
Government,
Observation,
Drug discovery,
AI,
Charcot–Marie–Tooth disease,
Quality of life,
Drug development,
Peripheral neuropathy,
HNF,
Diagnosis,
IPhone,
Research,
Industry,
HIPAA,
Goal,
Acupuncture & Electro-Therapeutics Research,
Gaps,
Disease,
Data collection,
Pharmaceutical industry HNF's Global Registry for Inherited Neuropathies (GRIN), an IRB-approved, online database collects genetic reports, and specific diagnostic and medical tests, as well as self-reported patient data through the use of surveys.
Key Points:
- HNF's Global Registry for Inherited Neuropathies (GRIN), an IRB-approved, online database collects genetic reports, and specific diagnostic and medical tests, as well as self-reported patient data through the use of surveys.
- Additionally, visual documentation of challenges with activities of daily living, and expert assessment of the progression of the disease is collected.
- Natural history studies are critical to understanding conditions such as Charcot-Marie-Tooth (CMT) and advancing research to discover and develop new therapies.
- HNF identified several gaps in existing CMT natural history studies: the lack of collaboration amongst stakeholders, the lack of clinician observation of clinically relevant data, and the need to enroll more CMT patients.
Retrieved on:
Wednesday, September 1, 2021
Industry,
Nerve Damage,
Friends,
Quality of life,
Muscle atrophy,
Peripheral neuropathy,
Gene,
Charcot–Marie–Tooth disease,
Public service,
Diagnosis,
Family,
Social media,
CMT,
Research,
Government,
Drug discovery,
PSA,
Disease,
HNF,
Awareness,
Injury,
Acupuncture & Electro-Therapeutics Research,
Multimedia,
Bullying,
Public service announcement,
The,
Motion,
Chronic pain,
Patient,
Self-care,
Atrophy,
CEO,
Movement,
Physical education,
Facebook,
Muscle weakness,
View,
Drug development,
Pharmaceutical industry,
Nightclub,
Online shopping NEW YORK, Sept. 1, 2021 /PRNewswire/ -- The Hereditary Neuropathy Foundation (HNF), an advocacy and research non-profit 501(c)3 organization, today brings back its "eye-catching" Public Service Announcement (PSA) 20 years after it was initially launched.
Key Points:
- NEW YORK, Sept. 1, 2021 /PRNewswire/ -- The Hereditary Neuropathy Foundation (HNF), an advocacy and research non-profit 501(c)3 organization, today brings back its "eye-catching" Public Service Announcement (PSA) 20 years after it was initially launched.
- Currently, thousands of people with CMT are undiagnosed, yet are suffering with the symptoms of this chronic and often disabling disease.
- Children are often pushed into Physical Education class and other activities that are not adapted to their special needs.
- Show your support for CMT families and increase awareness across the globe by updating your Facebook profile photo with your exclusive frame.
"The Neuromuscular Division of the AdventHealth Neuroscience Institute is overjoyed to partner with the Hereditary Neuropathy Foundation as a Center of Excellence.
Key Points:
- "The Neuromuscular Division of the AdventHealth Neuroscience Institute is overjoyed to partner with the Hereditary Neuropathy Foundation as a Center of Excellence.
- The HNF has established itself as an organization in which individuals with hereditary neuropathies-also known as CMT-come first.
- "HNF is thrilled to bring its groundbreaking Movement is Medicine program to Winter Park," said Allison Moore, Founder and CEO of HNF.
- AdventHealth Orlando is also home to the Translational Research Institute for Metabolism & Diabetes and the Nicholson Center for Surgical Advancement.
Retrieved on:
Thursday, September 26, 2019
NEW YORK, Sept. 26, 2019 /PRNewswire/ --The Hereditary Neuropathy Foundation (HNF) is proud to share the Voice of the Patient (VoP) Report which was recently published on the FDA website.
Key Points:
- NEW YORK, Sept. 26, 2019 /PRNewswire/ --The Hereditary Neuropathy Foundation (HNF) is proud to share the Voice of the Patient (VoP) Report which was recently published on the FDA website.
- The report highlights the results of the Externally-led Patient-Focused Drug Development (PFDD) Meeting.
- Our mission was to improve inclusion and empathy, reduce stigma, and address the unmet medical needs of our community today.
- This VoP report marks the beginning of a brighter future for people living with all types of CMT/IN throughout the world.
Retrieved on:
Wednesday, September 4, 2019
HNF excited to announce two awesome CMT Awareness Spin events this month!
Key Points:
- HNF excited to announce two awesome CMT Awareness Spin events this month!
- As part of their "Movement is Medicine" program, HNF has held countless spins, runs and rides to help raise funds and awareness for CMT research.
- Founder Allison Moore had a vision years ago that exercise would be a wonderful way to spread awareness across the nation and raise funds.
- "We are extremely excited to be working together with the Hereditary Neuropathy Foundation on the Team CMT Spinto help raise money for CMT research and programs."
Retrieved on:
Thursday, September 20, 2018
Additionally, HNF is announcing their Patient-Centered CMT Behavioral Health Summit to be held on Saturday, September 29, 2018, at the College Park Marriott Hotel and Conference Center in Hyattsville, MD.
Key Points:
- Additionally, HNF is announcing their Patient-Centered CMT Behavioral Health Summit to be held on Saturday, September 29, 2018, at the College Park Marriott Hotel and Conference Center in Hyattsville, MD.
- Learn more:
Register for the Patient-Centered CMT Behavioral Health Summit here.
- About Online Patient Clinical Study: GRIN
HNF aims to collect critical information from a large, diverse cohort of patients providing researchers, drug makers, regulators and payors critical insight into the lived experience, genetics and variability of CMT.
- This year's annual Patient-Centered Summit will be a game-changer experience for CMT patients and families, with a strong focus on behavioral and emotional health.
Retrieved on:
Thursday, September 6, 2018
We, as patients, are now steering the direction of our futures and have a responsibility to make our voices heard."
Key Points:
- We, as patients, are now steering the direction of our futures and have a responsibility to make our voices heard."
- Their lead drug is PXT3003,for the treatment of CMT1A, and benefits from orphan drug status in the United States and Europe.
- "We are honored to support and participate in the first FDA Externally-led Patient-Focused Drug Development (PFDD) meeting conducted by HNF dedicated to Charcot-Marie-Tooth disease," said Prof. Daniel Cohen, M.D., Ph.D., Co-Founder and Chief Executive Officer of Pharnext.
- HNF developed the Therapeutic Research in Accelerated Discovery (TRIAD) program , a collaborative effort with academia, government and industry, to develop treatments for CMT.
