Happy Almost-Friday!
This week, we’re highlighting two organizations: one helps patients seeking gene therapy learn about the treatments, and the other helps families affected by a newly-recognized condition. After that, we have a summary of a study on LEMS and an insightful piece from Tom Seaman on finding meaning, even when you’re hurting. Sit back, stay warm, and enjoy our editor’s choice!
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AskFirst: A New Collaborative Program to Support Rare Disease Patients in Gene Therapy Clinical Trials
Gene therapy is exciting, but it also includes a lot of unknowns. This group helps patients navigate the experience in an informed, supported manner.
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Everything You Need to Know About the EBF3-HADDS Foundation
EBF3-HADDS is a new diagnosis, so it’s in need of a larger community. This group is helping to change that.[one_half]
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Study Tracks Survival, Quality of Life, and Follow up for Lambert-Eaton Myasthenic Syndrome Patients
This study provided new information about the course of LEMS throughout a lifetime. [one_half]
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How to Find Meaning and Purpose Even When You’re Suffering: Q&A with Tom Seaman, Health Coach
PW contributor Tom Seaman is back with more words of wisdom on navigating life with a rare condition.
