All Blog Posts (5)

I’m the co-founder of this site and help run a group called Ben’s Friends (www.BensFriends.org) that builds patient support networks for people with rare conditions. I do this cause I love it. I’ve met so many wonderful friends on this journey.

It all started when my buddy, Ben Munoz, had a stroke caused by a rare condition called AVM. Ben survived but during recovery he couldn’t find a support group…so he started one called…

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MyositisSupport Members, Friends and Family,

As we begin a brand new year, envigorated with greater joy and compassion, we renewed our greater commitments to our community. BensFriends grew tremendously in the past three years, and we want to take this moment both to thank you and to make a promise to continue fulfill our mission: to ensure that everyone in the world with a rare disease has a safe place to go and connect with others like them.

We’re truly…

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MyositisSupport Members, Friends and Family,

We hope this message finds you well with high spirits and inner joy. We’re happy to inform you that our Myositis community continuously been growing. And as always, we’re here to give strength and support.

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IN THIS…

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Hey guys is there anyone out there who has developed interstitial lung disease with polymyocitis/dermatmyocitis?  my lung dr keeps warning me about it and doing pulmonary funtion tests....from all the googling ive done, once you get it most folks only live 3-5 yrs....pretty scary,very concerning since im only 55 alone (i have kids-but no husband) to try to deal with this all alone.....

We have some important information we are happy to announce!

As you all know we run support networks for people affected who have a…

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