CATEGORIES: Research | Vitaccess

CMT&ME APP Adds New Medical Profile

by | Jan 6, 2020 | 0 comments

Did you know you can now store your CMT data at your fingertips? The CMT&ME app, developed by Vitaccess, has updated the app to include a brand new medical profile. To update the app, go to your app store and click update. 

In collaboration with our industry partners Pharnext and Vitaccess, we are thrilled to bring to you new features of the CMT&Me App. 

“This two-year study, which has been launched in 6 countries, was built for you and by you, the patients,” says Dr. Youcef Boutalbi, Pharnext Medical Affairs Director at the groundbreaking HNF Movement is Medicine™ Summit Crowd-Design Workshop on November 8-9, 2019. 

Currently this is the only mobile App for patients to record details on their diagnosis, list current or prior medications or participation in clinical trials, and log in regularly to report on symptoms, such as pain, falls, sleep, and so much more. 

This vital partnership gives our members the opportunity for their voices to be heard! By sharing your daily or weekly experiences and challenges, you are participating in very important research that will help Pharnext and the entire CMT community accelerate therapies to address your unmet medical needs, expand the knowledge of what you, as patients, face. Most importantly, it will provide a portal to store your data to refer back to or even share with your doctors. 

Allison Moore, Founder and CEO of HNF, has worked closely with Dr. Mark Larkin, Founder and CEO of Vitaccess, to disseminate CMT&Me research findings at global medical conferences to increase awareness of the CMT patient experience and advise regulators and payers (ie. insurance companies) on the impact CMT has on quality of life. The latest poster sessions Mark and Allison were highlighted at the AANEM annual conference in Austin, TX. 

  • Diversity in the Charcot-MarieTooth Disease Population in the United Kingdom and United States: Insights from a Digital Real-World Observational Study 
  • Treatment of Charcot-Marie-Tooth Disease in the United Kingdom and United States: Insights from a Digital Real-World Observational Study 

The CMT&Me App has shed additional insights into this grossly underserved community and the unmet need of medical care and treatments for our patient community. Pharnext, Vitaccess and HNF recognize the urgency of getting drugs approved and commercialized for CMT, so don’t wait, join today! 

CLICK HERE FOR MORE INFORMATION: www.hnf-cure.org/living-with-cmt/cmtme-study 

DOWNLOAD THE CMT ME APP TODAY! www.hnf-cure.org/cmtme-study

Learn more on this topic

Related Blog Posts

New Study on CMT Type 2B

If we are to learn more about CMT and the effectiveness of rehabilitation it is worth asking the patient and their caregiver. A recent Italian study by Padua et al recently described a survey of CMT patients and caregivers and their perspectives and perceptions of rehabilitation efficacy and needs.

Allison Moore is going to be published!

HNF’s CSO (Chief Scientific Officer), Sean Ekins wrote a blog about his work with Allison Moore and her two “fighter Mom” friends Lori Sames and Jill Wood. He named his blog: “Rare disease heroes – Extraordinary collaborators we should be listening too.” Sean helped my friends and I write a paper called: “Multifaceted roles of ultra rare and rare disease patients/parents in drug discovery.” YES, Allison Moore is going to be published! It will be in Drug Discovery Today, soon. The link to the reprint is below.

HNF-WVU-NIOSH Study update:

We are pleased to update our readers on the progress of the WVU-NIOSH study, “A Bi-Directional Translational Model of Exercise Training in the Treatment of Charcot-Marie-Tooth Disease”

Dr. Robert Baloh Answers Our Questions About iPS Cell Research

Big news is happening on a cellular level at Cedars-Sinai Medical Center’s Regenerative Medicine Institute in Los Angeles, CA.  Robert H. Baloh, MD PhD, Director of Neuromuscular Medicine, in conjunction with Patrick D. Lyden, MD Neurology Dept. Chair, and Clive Svendsen, PhD, Institute Director, are studying disorders that start in nerve cells. 

Join the conversation

Leave a Comment

0 Comments

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news