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  • Caregiver’s Toolkit

    Posted by Ashley on June 29, 2022 at 8:17 am

    Good morning! 🙂


    I know many of our members are not diagnosed with LEMS but have family members they care for with LEMS, so this one is for you

    Too often caregivers are “forgotten” about or may not know that there are resources available to help with caregiving and prevent burnout! 

    • In the past, we released a Flash briefing that included information in the past about a caregiver guidebook called  “Not Alone In the Dark”, For and By Caregivers of Children with Rare Diseases”. 
    • If you want to check out this flash briefing you can access it here 


    • Many of you may be aware of the resources on the LEMS aware website, but did you know there is a section just for caregivers?
    • You can find it here!


    Lastly, The Mighty (a community for those with rare or chronic illnesses) offers a “digital toolkit” for caregivers that seems helpful. 

    • One of the most helpful things this resource offers is information on finding respite help! Respite help is so important because caregivers are often so focused on their family members, that they forget to take time for themselves!


    If you are a LEMS caregiver, have you used any of these resources before?

    If so, what resource did you use?

    Ashley replied 2 years ago 0 Member · 0 Replies
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