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How You Can Help Spread the Word About LivingWithVWD.org

Started May 18 0 Replies

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

How to Create Group and Organize A Meetup in Your City

Started Dec 19, 2011 0 Replies

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

Trouble with the Send Button (or Other Buttons)

Started Aug 13, 2011 0 Replies

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

Helping Make Our Community Easier to Find

Started Jun 27, 2011 0 Replies

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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Latest Activity

Ben Munoz's blog post was featured

May 2012 LivingWithVWD Community Newsletter

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 of April: 17,629. This is 924 higher than March, our biggest…See More
Sunday
Ben Munoz posted a blog post

May 2012 LivingWithVWD Community Newsletter

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 of April: 17,629. This is 924 higher than March, our biggest…See More
Saturday
Ben Munoz posted a discussion

How You Can Help Spread the Word About LivingWithVWD.org

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 as our largest communities, http://www.LivingWithTN.org and http://www.AVMSurvivors.org.  It's just a matter of time.If you have ever felt alone in this, then you know how important support and connection are.…See More
May 18
Nellie joined Ben Munoz's group
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Friends and Family of VWD

Where friends and family meet to share views, insights and stories. See More
May 2
Ben Munoz posted a blog post

April 2012 Community Newsletter

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 globally online and we recognize your participation on…See More
Apr 21
John "JC" Colyer joined Ben Munoz's group
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Moderators Group New

A private group exclusively created for LivingwithVWD.org moderators.See More
Mar 30
Ben Munoz added a discussion to the group Moderators Group New
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March Newsletter

Hi, we're working on the draft of our March community newsletter, anyone who would like to add specific announcements, updates or stories for the community? Please let me know by adding comments to this Comment Wall.  Thanks!See More
Mar 8
Ben Munoz posted a blog post

February 2012 Community Newsletter

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 challenge of fighting rare, debilitating illnesses by weaving a web of…See More
Feb 22
Ben Munoz added a discussion to the group Moderators Group New
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February Newsletter - Stories and Announcement, Anyone?

Dear Moderators,We are starting to collect interesting stories/blogs/discussions that can be highlighted and included for our February issue of our community newsletter. If you have any interesting stories, important announcement and suggested information for the content, kindly post a comment or reply with this discussion thread.Your contribution is highly appreciated.Thank you so much!BenSee More
Feb 17
Ben Munoz added a discussion to the group Moderators Group New
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Approving New Members

Hi, The LivingWithTN.org moderators have initiated developing some guidelines to help community moderators in approving new members and helping the network to avoid spammers. Please check out these helpful guidelines and see what you can add more in our standard list:1. Prior approval, verify applicant's background information by checking his profile page Click the “View Page” link to check out the applicants profile that he filled out when he joined and going forward approve, decline, or…See More
Feb 8
Ben Munoz posted a blog post

January 2012 Community Newsletter

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 them.We’re truly privileged to help you make 2012…See More
Jan 26
Ben Munoz posted a group
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Friends and Family of VWD

Where friends and family meet to share views, insights and stories. See More
Jan 16
Rose Andrade joined Ben Munoz's group
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Moderators Group New

A private group exclusively created for LivingwithVWD.org moderators.See More
Jan 6
Ben Munoz left a comment for Dolphin1975
"Hi, Dolphin, welcome to our VWD community.  We're here to support all VWD patients around the world!"
Jan 4
Scott Orn joined Ben Munoz's group
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Moderators Group New

A private group exclusively created for LivingwithVWD.org moderators.See More
Jan 3
Ben Munoz replied to Ben Munoz's discussion New Community Logo in the group Moderators Group New
"Hi Everyone, Uploaded image is the proposed new version of our community logo. We highly appreciate any comments and feedback coming from you. Thanks!"
Jan 3

Ben Munoz's Blog

May 2012 LivingWithVWD Community Newsletter

Posted on May 26, 2012 at 9:00am 0 Comments

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…

Continue

April 2012 Community Newsletter

Posted on April 21, 2012 at 5:00am 0 Comments

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…

Continue

February 2012 Community Newsletter

Posted on February 22, 2012 at 11:09pm 0 Comments

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…

Continue

January 2012 Community Newsletter

Posted on January 26, 2012 at 10:00am 0 Comments

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…

Continue

Comment Wall (3 comments)

You need to be a member of Von Willebrand's Disease (VWD) - Online Support Group to add comments!

Join Von Willebrand's Disease (VWD) - Online Support Group

At 12:46pm on November 30, 2011, lewismummy said…
Thank you x
At 12:46pm on November 30, 2011, lewismummy said…
Thank you x
At 12:04am on October 25, 2011, leeahrae said…
Thank you Ben, I appreciate that!
 
 
 

We Need Your Help

4 Quick Ways You Can Help
1. Tell a friend or relative that we may have a community for them. Our communities are listed below this page.
2. Tell journalists and bloggers about our story and our mission.
3. Help us launch a new patient community for someone you know. Email:info@bensfriends.org.
4. Help our Google rankings by linking to BensFriends.org or any community from any web site you can.

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"To Know the Joy of Giving"

Blog Posts

Facebook Feature Supports Organ Donation

Posted by Armando Abrero on May 28, 2012 at 8:33pm 0 Comments

We never realize the value of organ donation, until we're on the receiving end.…



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May 2012 LivingWithVWD Community Newsletter

Posted by Ben Munoz on May 26, 2012 at 9:00am 0 Comments

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…

Continue

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