Living With Charcot-Marie-Tooth Disease

18/12/2019

https://youtu.be/fOqAx7c7ge8?t=69

11/10/2019

In addition to our daily mission of peer-to-peer patient support, your Ben’s Friends team is busy with a number of ongoing projects to provide members with new resources to live with their disease and need your help to make it happen:

Under development:

*New RAD (Reactive Attachment Disorder Support) community
*New Living With Spinal Muscular Atrophy community
*Expansion of our existing communities to include Caretaker Support for those closest to rare disease patients

Enhanced Services for Members:

*The opportunity for patients to centralize their and their family’s medical information in a single, secure, portable, virtual “Patient Wallet”.
*The chance to have a complete genomic array done at no charge to add to their patient wallet, as well as the opportunity to contribute to a biobank for future research
*Access to an online referral service for physicians, clinics, and additional resources specific to their disease.

Connections with the rare disease research community:

*Members choosing to build a personal patient or family wallet will have the ability to participate in trials, basic research and early access programs, benefiting not only themselves but the rare disease community as a whole
*Development of an anonymized natural hIstory database for researchers wanting to understand the burden of specific rare diseases, and what really matters to patients.

10/09/2019

Living With Charcot-Marie-Tooth Disease is Ben’s Friends Facebook landing page for our Peer to Peer Patient Community at: http://www.livingwithpolyneuropathy.org/

Living With Polyneuropathy is an online patient community for patients and caregivers affected by Polyneuropathy. It is a safe, secure, and private. place to get and give support for patients, caregivers, and family affected by polyneuropathy

Our mission is to ensure that patients living with rare diseases or chronic illnesses have a safe and supportive place to connect with others like them.
Our communities have proved a valuable guide for members seeking to understand their diagnosis, symptoms, and their treatment options. Ben’s Friends provides a friendly environment that allows for bonding. Many a lifelong friendship has been forged on our communities. But most of all, Ben’s Friends is successful because it changes our members’ relationships with their disease. “I have the disease; it doesn’t have me” is a mantra often repeated by members, as they gently guide each other toward effective coping mechanisms and enable our patients to live the fullest lives possible.

Living With Polyneuropathy is a peer to peer support site for Patients and families affected by Von Polyneuropathy at http://www.livingwithpolyneuropathy.org/

What is Livingwithpolyneuropathy.org?

Livingwithpolyneuropathy.org is a dedicated patient-to-patient support community for families affected by Polyneuropathy.Livingwithpolyneuropathy.org is powered by BensFriends.org, patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Polyneuropathy. Specifically all though there are many forms of Polyneuropathy, we concern ourselves here primarily with Guillian-barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT). As these diseases have much in common with each other and with Polyneuropathy in general there is much that can be shared to help all Polyneuropathy sufferers.

Who can join Livingwithpolyneuropathy.org?

If your family has been affected by Polyneuropathy, consider Livingwithpolyneuropathy.org your second home. Livingwithpolyneuropathy.org, as well as the rest of BensFriends.org’s patient communities, is free for members to join.

What is BensFriends.org?

In 2007, Ben Muñoz suffered a rare form of stroke caused by an AVM. He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.

BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, BensFriends.org provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives.

How to Create an account at http://www.livingwithpolyneuropathy.org/

After clicking on create a new account You will get a Create new account Screen. Simply fill out all the information. After creating your new account, two steps must occur before you can post and reply to discussions:
1. You will have to confirm your email address
2. Our moderator will approve your account.
Open your email inbox, and look for an email from Ben’s Friends. Click the link to activate your account

Once our moderators have approved your membership, you will receive another email. As our sites are run by volunteers, it can take up to a few days for this to happen. You can still view discussions even if your membership isn’t approved. Once approved, you are good to go!

You can learn more about BensFriends.org at http://www.bensfriends.org or watch one of our videos at http://www.youtube.com/BensFriendsVideos

Support network for Polyneuropathy, Guillian-barre Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT)