News From Ben's Friends

News From Ben's Friends

Changing patients' lives everyday.

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Some of the Things You Can Do to Help Patients with OPMD

Sascha Gallardo January 20, 2021January 20, 2021

Oculopharyngeal muscular dystrophy or OPMD is a rare genetic disorder that is characterized by muscle weakness. Symptoms usually manifest in

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History Lessons and Immunizations

TJ (Tom James) December 25, 2020December 25, 2020

Finally we have a covid vaccine. I am amazed at the kick back from the Anti Vaxxers seeing it as

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Ben’s Friends 2020 Highlights

Sascha Gallardo December 7, 2020December 7, 2020

Just like that, 2020 is almost done. I know we say this all the time, but the days seem to

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Happy 10th Anniversary, Living with PsA!!

Ben Munoz November 30, 2020December 4, 2020

Can you believe it? Our Living with Psoriatic Arthritis community has just turned 10 this month.  Time flies sooo fast. 

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depression rare disease
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Depression and Autoimmune and Chronic Illnesses

Sascha Gallardo November 18, 2020November 24, 2020

One of the things the Ben’s Friends team always tries to emphasize in the communities is to never to feel

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Vaccine protocols and COVID

TJ (Tom James) November 9, 2020November 9, 2020

Basic protocols never change based on a particular set of circumstances. In the cases of vaccines, those protocols are not

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What’s Your And? Podcast features Scott Orn

Sascha Gallardo November 5, 2020November 5, 2020

Ben’s Friends co-founder and board member Scott Orn was featured recently in John Garrett’s podcast. Titled What’s Your And?, the

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Some of Ben’s Friends secrets to maintaining healthy communities

Sascha Gallardo October 26, 2020October 26, 2020

Ben’s Friends has been successfully running online patient communities for thirteen years and it just continues to grow. We are

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Preparing for Your Doctor’s Appointment

Sascha Gallardo October 13, 2020October 14, 2020

Getting the most out of your consultation with a doctor for a rare disease is already challenging. Now that we

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Ben Munoz shares the story of Ben’s Friends in RARECast

Sascha Gallardo October 6, 2020October 6, 2020

Global Gene’s podcast interviewed Ben Munoz recently about his experience as a survivor of an arteriovenous malformation stroke, connecting with

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Spotlight on our Moderator: Isaiah of the Living with Eagle Community

Sascha Gallardo September 30, 2020October 2, 2020

It’s Living with Eagle Syndrome community founding anniversary! Specifically, on the 27th of September in 2010, the community that provides

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Stanford researchers found possible treatment for idiopathic pulmonary fibrosis

Sascha Gallardo September 29, 2020October 13, 2020

A recent study conducted by researchers from Stanford University found immunotherapy as a  promising treatment for idiopathic pulmonary fibrosis. IPF

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Global Genes’ Rare Daily website features Ben Munoz

Sascha Gallardo September 29, 2020September 30, 2020

Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global

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My Wife’s Aneurysm and the People Who Are There For Us

Cindy Payne September 28, 2020September 28, 2020

I am blessed enough to be married to my best friend, Elaine. We met at church in 1992,  became really

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Recent Genetic Study Found Distinct Subtypes of Polycystic Ovary Syndrome

Sascha Gallardo August 31, 2020October 13, 2020

Results of a genetic study published on June 23 in PLoS Med showed two polycystic ovary syndrome subtypes.  “Using an

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Endometriosis Research to Receive Additional Federal Funding in the US

Sascha Gallardo August 31, 2020October 13, 2020

Some news about endometriosis research has been on the headlines lately which could be promising for women suffering from this

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Rare Disease Diagnosis: Difficulties and Advancements

Sascha Gallardo August 31, 2020October 13, 2020

Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their

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Ben’s Friends Communities Are Getting a Fresh New Look!

Sascha Gallardo July 29, 2020July 29, 2020

We’re so excited to announce that our community sites will soon have a fresh new look. Compared with the old

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Effects of eculizumab use show promise for patients with myasthenia gravis

Sascha Gallardo November 3, 2020November 3, 2020

Recent studies show encouraging results of the use of eculizumab in treating myasthenia gravis. Published in the August 2020 issue

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News From Ben's Friends

News From Ben's Friends

Changing patients' lives everyday.

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