Looking For Your Von Willebrand's Stories!


Dear Von Willebrand’s Support Member,

For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases.

But it’s not enough. We would like more people to know about this wonderful service.

To that effect, we are planning a social media campaign that will highlight the benefits of the Ben’s Friends online communities. We would like this to come directly from you, our members, to ensure the information is authentic and speaks directly to the reader.

So…we are inviting you to share with us your feedback on the platform, what makes it special, how it’s helped you, why you use it, and why others should as well.

Important note: our social media posts will be edited to avoid sharing any personal information, but will be 100% inspired by and representative of your stories.

If you are interested in contributing, please send your story as an email to bf.stories@bensfriends.org.

Note: by sending your story via email, you give Ben’s Friends consent to leverage some of its contents to create its social media posts, provided no patient privacy information is divulged.

Thank you,

Ben’s Friends Rare Disease Communities


Hi, i have von willabrands facror 8,i will be seeing my new hematologist soon.im having shoulder surgery and will need pre surgery meds.i think its ddvap or stimate.im 54 was diagnosed at 22