The Hereditary Neuropathy Foundation is proud to announce that this year our annual Patient-Centered CMT Summit will include the Hereditary Neuropathy Pressure Palsy (HNPP) community to bring these stakeholders together in a focused manner to address a glaringly under-appreciated patient challenge: dealing with chronic pain. HNPP is one of the most common inherited neuropathies that suffers with chronic pain. This year’s Summit will take place on Friday, November 3, 2017, on MIT’s campus in Cambridge, Massachusetts.
For decades, the Charcot-Marie-Tooth (CMT) and inherited neuropathies (IN) patient community has expressed concerns regarding the impact that pain (neuropathic as well as musculoskeletal) is having on their daily lives. This was evident in our first hosted Patient-Centered CMT Summit in 2016. People with CMT and IN have chronic pain stemming from the disease state itself, as well as pain caused by the limited treatments currently available (i.e. surgery, improper use of braces and/or AFOs). Not to mention the emotional pain of living with chronic illness, especially for children and young adults navigating living with their disease. However, there is little evidence of work being done to address this important and debilitating symptom of CMT/IN, neither in the clinic nor in the laboratory.
HNF has decided to focus this year’s Summit on pain to give CMT/IN patient’s tools to help manage their pain. HNF also hopes the Summit will encourage more research and greater understanding of CMT/HNPP patients’ needs when designing clinical trials HNF has decided to focus this year’s Summit on pain to give CMT/IN patient’s tools to help manage their pain. HNF also hopes the Summit will encourage more research and greater understanding of CMT/HNPP patients’ needs when designing clinical trials:
- Scientific overview of types of pain and pain mechanisms involved.
- A review of scientific understandings of pain specific to CMT/HNPP.
- Assessment of current CMT/HNPP pain treatment options and discussion of available pain therapies for treatment and coping.
- Partnering with Your HCPs to Ask for Help with Pain Management.
- Communicating with Loved Ones About Your Pain—Getting the Help You Need.
- Panel Presentation: Powering Through—Keeping Active and Living Your Life at Home/at Work Despite the Pain.
Please join us November 3rd in Cambridge, Massachusetts to join in the conversation on this critical topic. Patients, loved ones, caregivers, health care practitioners, researchers, industry, payors, and policymakers are all invited to ensure a comprehensive discussion on this greatly underserved community need.
Please also include me on any helpful suggestions for relief of pain with HNPP.
I am unable to attend but would like to see a report or video of this meeting. Pain has definitely become a rate-limiting factor for me and is one good reason why I cannot attend meetings such as this.