Author Archives: Mary Chapman

EveryLife Introduces First of Kind ‘Roadmap’ to ICD Codes

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…

Equine-assisted Therapy for LEMS

Equine-assisted therapy involves activities with horses to promote the physical and mental health of riders. For people with Lambert-Eaton myasthenic syndrome (LEMS), this kind of therapy may help to improve balance, flexibility, and other functions, and has also been shown to provide an emotional boost. What is LEMS? LEMS…

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a presentation by a Nobel laureate recently recognized for her work on a gene editing tool. The free, virtual…

Importance of Advocacy for LEMS Patients

Health advocates promote patient health and access to medical care. If you or a family member has a rare disease such as Lambert-Eaton myasthenic syndrome (LEMS), it could be helpful to learn about health advocacy and how to get involved. About LEMS LEMS is a progressive autoimmune disorder that affects…

Pandemic Won’t Stop Rare Disease Day on Feb. 28

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons…

Hydrotherapy for LEMS

Hydrotherapy, or the use of water exercises, is a complementary therapy that may benefit some people with neuromuscular conditions such as Lambert-Eaton myasthenic syndrome (LEMS). Here is some information about hydrotherapy and how it may be helpful to you. About LEMS LEMS is a progressive autoimmune disorder that affects…

NORD’s 6th ‘State Report Card’ Notes Progress, Raises Concerns

While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “State Report Card” argues that many concerns — notably out-of-pocket costs for prescription medicines and access to affordable comprehensive care — still need attention. Those were the findings of the…

Massage Therapy for LEMS

For some with Lambert-Eaton myasthenic syndrome (LEMS), massage therapy may help in reducing muscle pain and weakness, as well as in improving flexibility. Here’s more information about the disease and massage therapy. About LEMS LEMS is a progressive autoimmune disorder that affects the nerve cells that control muscle movement.