Resources

Here are some of our favorite sites for basic information about myositis:

The Myositis Association website click here

Muscular Dystrophy Association website click here

Arthritis Foundation website click here

MedlinePlus (National Institutes of Health) website click here

John Hopkins Myositis Center website click here

London’s Global University website click here

Cure JM Foundation website click here

Here are some other sites that go more in-depth with the battles of living with a chronic illness:

IDA (Invisible Disabilities Association) website click here

NORD (National Organization for Rare Disorders) website click here

Office of Rare Diseases Research click here

The Alliance for Biotherapeutics (fair access to plasma therapies) click here

Kids Health (medical and emotional impact of caring for an ill child) click here

Patient Advocate Foundation (patient access to care, maintenance of employment and financial stability) click here

Advocacy for Patients with Chronic Illness website click here

American Autoimmune Related Diseases Association (AARDA) website click here

American Chronic Pain Association (ACPA) website click here

IG Living magazine and blog click here

Quest magazine click here

We Connect Now website click here

Grief Watch website click here

Grief Share website click here

We have also come across some other great blogs, Facebook pages, and support groups that we’d like to share. These are great to follow discussions, ask questions, and to meet others with myositis – best to hear it from someone who knows what we are talking about/feeling/living:

It’s Myositis blog click here

Myo-Musings blog click here

Life!disabled blog click here

Laura’s Mind Escape blog click here

Michigan Immunodeficiency Foundation Facebook page click here

Myositis Association Community Forum discussion board click here

Myositis Support Group – UK website click here

Daily Strength support group click here

ModernLoss.com community board click here

Myositis Ramblers Facebook page click here (this is a closed group, but just ask to join and you’ll get added!)

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2 thoughts on “Resources

  1. Myositis Patients and Caregivers Support Group, Myositis Understanding and Support Group, Understanding Myositis; all of these 3 are facebook pages. the first 2 are closed groups and if you have a myositis you may join, the last one is a public page.

  2. Hi Myositis Colorado,

    Happy August! My father has IBM and we are looking into ways to secure assistance from the VA as he was in the 101st and 82nd airborne in Vietnam in 1968. Does the Colorado chapter have any information on or experience working with the VA (Veteran’s Affairs) to secure financial assistance?

    In particular, my dad is trying to get placed in Priority Group #4 (ie-catastrophically disabled) so he can secure funding from the VA. He took the survey to get prioritized and got a score of zero.
    I didn’t know if any members in CO have gone through the process or know any tricks. They are currently assigned to a rep and will be speaking with someone this week.

    I know of one gentleman with IBM that successfully got placed in group 4. We read his story in the winter addition of the Quest newsletter.

    On a side note, I know that the Department of Veteran’s Affairs is evaluating medical conditions that could be associated with Agent Orange. They will make there decision by November 1, 2017. Does anyone know if Myositis has been included in the list of conditions to be evaluated?

    Thank you for any assistance you can give.

    Best,

    Doug Knox
    303-386-5711
    douglasrknox@gmail.com

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