The Hereditary Neuropathy Foundation (HNF) will present a patient-centered Charcot-Marie-Tooth disease (CMT) summit June 7-8 that will address clinical trial readiness. The event will happen at the Loews Coronado Bay Resort, San Diego, and a limited number of discounted rooms are available. Tickets are $200 for patients and…
From switching out Facebook frames and viewing educational videos, to attending “band” exercise classes and rounding up purchases to the next dollar to benefit research and community programming, supporters are marking Charcot-Marie-Tooth (CMT) Awareness Month, observed every September. According to advocates, calling attention to the group of inherited peripheral…
A collaboration between Genome Medical and the Hereditary Neuropathy Foundation has led to a virtual initiative that seeks to reduce genetic testing barriers for Charcot-Marie-Tooth (CMT) disease patients. The new Charcot-Marie-Tooth Genie Project genetic testing program aims to provide the CMT community and its healthcare providers with…
Treatments for all types of Charcot-Marie-Tooth disease (CMT) will be the focus of the second annual Global CMT Research Convention, Sept. 16 and 17, in Cambridge, Massachusetts. Presented by the CMT Research Foundation, the event brings together patients, scientists, and biopharmaceutical companies to celebrate treatment advancements and the pioneers…
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
From sporting special gear to joining a “Band Together” class — a workout session using resistance bands to improve range of motion among Charcot-Marie-Tooth patients — supporters are marking CMT Awareness Month, observed each September. Advocates say heightening awareness is vital to increasing the recognition, diagnosis, understanding, and…
Following the Olympics, now comes the Tokyo 2020 Paralympic Games, which will spotlight thousands of competitors with various disabilities from more than 150 countries across the globe. Competing for Team USA in swimming will be Jamal Hill, of Southern California, who has Charcot-Marie-Tooth (CMT) disease. Along with five other…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual Living Rare Living Stronger Patient and Family Forum, hosted by the National Organization for Rare Disorders (NORD) and set this year for June 26-27. The conference brings together patients,…
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