Started May 18 0 Replies 0 Likes
Members and friends,We're glad that all of you have managed to find our community, part of the Ben's Friends network of patient communities. Without a doubt, we will one day be as large and active…Continue
Started Dec 19, 2011 0 Replies 0 Likes
Since others have subsequently asked about organizing groups and meetups in their area, the moderators and I have decided to create this forum discussion so the community can throw out ideas and…Continue
Started Aug 13, 2011 0 Replies 0 Likes
Apologies, this is a re-ocurring problem. I've found that if I scroll down on the page farther, creating 2 inches between the "Send" button and the bottom of the browser window, then it works. When…Continue
Started Jun 27, 2011 0 Replies 0 Likes
A member of our sister site http://www.ChiariSupport.org posted a tutorial on how to make our community easier to find on the internet by linking to us from…Continue
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Ben Munoz replied to Ben Munoz's discussion New Community Logo in the group Moderators Group NewPosted on May 26, 2012 at 9:00am 0 Comments 0 Likes
Dear Friends and Family of LivingWithVWD,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities have reached four consecutive monthly peaks in all aspects of our activities, overshooting even the targets we have set ourselves two months ahead!
Here are some highlights:
Total members for all communities at the end…
ContinuePosted on April 21, 2012 at 5:00am 0 Comments 0 Likes
Dear Friends and Family of LivingwithVWD,
April – the smell of spring in the air!
Spring brings a lot of positive notes: it signals growth and rebirth. As Ben’s Friends, our patient support group is growing real fast. As a member community, you’ll see stats on how we contributed to this growth as reported below. Be assured that no matter how small the contribution may be, it adds up and it is very much appreciated!
Our presence is being felt…
ContinuePosted on February 22, 2012 at 11:09pm 0 Comments 0 Likes
Dear Friends and Family of LivingWithVWD,
As you well know, living with VWD can be very challenging not only for you but to your families as well. This organization was built with a view to helping you and your families to live up to this challenge by linking you up with people who share similar experiences and have succeeded in maintaining a positive outlook!
Explore more how our community had helped members face the…
ContinuePosted on January 26, 2012 at 10:00am 0 Comments 0 Likes
LivingWithVWD 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…
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lewismummy said…
lewismummy said…
leeahrae said… This community is part of the Ben's Friends network of patient communities. Learn more at bensfriends.org.
Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
Disabilities
Eagle Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Lupus
Multiple Myeloma
Myositis
Narcolepsy
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Synovial Sarcoma
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
"To Know the Joy of Giving"
Posted by Armando Abrero on May 28, 2012 at 8:33pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
Posted by Ben Munoz on May 26, 2012 at 9:00am 0 Comments 0 Likes
Dear Friends and Family of LivingWithVWD,
We are so excited we cannot wait to tell you about how our organization is growing, so we’ll go straight at it. We are please to tell you that collectively our patient communities…
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