It’s Okay To Not Be Okay

3 days ago

It’s okay to not have the perfect life, believe it or not, social media aside, no one has a life of perfection. It’s okay to not be okay and admit it. It’s okay to struggle and to be open with those who are close to you. By admitting that you are not okay, you are …

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Bens Friends 2018 Report

4 months ago

The following New communities were started in 2018, many of which represent co-conditions that occur with Rare Diseases already supported by Ben’s Friends Patient communities and may be of interest to our existing members:   Chronic pelvic pain (CPP) is a disabling disease that causes distress as the quality of life of CPP patients is …

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About Living With Rare Disease Support Community

LivingWithRareDisease.Org is a referal and support site for all of Bens Friends Communities. Our hope is that patients, caretakers, and family/friends effect by rare disease and searching for support and information will use our Community and Latest Topic Guide to locate one of our over 40 support communities to get and give support with others …

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About Bens Friends and What We Do

Mission Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. Ben’s Friends is a network of safe and supportive patient communities for anyone affected by a rare …

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Biggest Challenges For Those Living With A Rare Disease

We asked you, the members of our  Ben’s Friends Communities, what they thought the biggest challenges are for those living with a rare disease. A quick survey in each of our support communities resulted some common themes, but also things that were unique to each community and to each person’s individual experiences. When analyzing the …

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