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Using our resources to learn and educate about LEMS
Hey all!
@lorildunham‘s article this week “I Appreciate Resources That Enable Me to Learn About Rare Disease” reminds us that we are all learning about LEMS, and sometimes other rare diseases too.
There is definitely a learning curve with chronic illness, as most of us here know but there are so many resources available to us, and to our physicians too!
Sometimes we forget to ask for help or may not know what resources are available to us!
I’m going to leave a handy “cheat sheet” here with some of the resources we have:
- LEMS Aware
- Lambert-Eaton News Home page
- Catalyst Pathways (Firdapse assistance)
- NORD (National Organization for Rare Disorders)
- Clinical Trials Info
- NORD Patient Copay Program
- MDA (Muscular Dystrophy Association)
- Rituxan AccessÂ
If you know of any others, feel free to post more links on this topic for the group!
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