Members: this is a revised version of a post from earlier this week. If you missed the first announcement, this is your chance to catch up on the big news!
@trust_level_0
New, and A BIG DEAL in 2022!
TJ and Seenie have been working almost two years on a project we simply call “Self Advocacy”. What started as a collection of articles and resources to help members in every community take control of their disease/condition has morphed into something much larger.
Finally, we are ready to start rolling it out. This is one of the communities to get the “preview” version: the material is still new, and there’s a lot more to come. The Self Advocacy category is still in BETA – please expect changes of all kinds. Of course, your comments, corrections and feedback are always welcome! Just hit the reply button, or send an email to ModSupport@BensFriends.org.
If you click on the 
Becoming a great advocate: for YOURSELF
The first will be that collection of articles on how to be a great self advocate. They aren’t fluff and many are from a provider’s view point. if you don’t know how and what your providers are thinking, they can’t possibly know how and what YOU are thinking.
“Ben’s Connections”: A different kind of Patient Registry
With the support of the extensive engineers, coders, and web-savvy team on loan to us by Nadine West, our Founder Ben Munoz’ company, we have developed the most unique Patient Registry in the Rare Disease world. It is100% private and 100% controlled by patients. That’s YOU. Unlike most other web services and registries out there, ours does not transmit patient data to anyone, ever.
Did you know that many, if not most, private and nonprofit patient sites make money by collecting and selling patient data? r We do not, and, by design, cannot collect data from you. But if you use social media, or you belong to any other patient support sites, they probably became multi-million dollar operations by scraping and selling YOUR private data to the highest bidder. Instead of taking data from you, Ben’s Connections will submit data TO you.
As a member of Ben’s Friends and Connections, you will be linked to every private and academic approved research study, including the latest treatment trial and studies. You will have the ability to participate if you wish, or simply follow the latest. We will inform you of opportunities we come across that may be of interest to you and your community members. Be on the lookout for Ben’s Connections coming soon!
But wait … there’s more!
We suspect by now it’s no secret that TJ, who looks after Ben’s Friends’ technical and medical side of things, was once “medical” and worked in research and academia along the way. (We’re keeping the details in our pad locked file.) One of the things TJ was passionate about when he was involved in various FDA projects and study approvals, was something called “Natural History’.
What’s “Natural History”? Some of medicine’s greatest discoveries have come about from researchers’ laser-sharp focus. But sometimes researchers become so narrow in their focus that they forget about what it’s like to be a patient. The problem is that what researchers may deem important or of concern, may simply not be important to patients.
Simply put, Natural History is what is happening with patients, and it is now a required part of every study and every drug trial and is the driving force. The problem has been that in far too many cases, researchers have focused on diagnostic markers such as lab test results. The FDA is now requiring researchers to pay attention to how diseases and their treatment affects the lives of real patients from the patients’ point of view.
In response to this shift, we are starting to produce Trending Reports so that open science researchers will know what is REALLY important to the patients in this community. That’s everyone here! You will be able to contribute, and you will know what’s important too! Maybe it applies to you, maybe you never knew. Soon, the first polls will start appearing on this community. Please participate: your input is important to everyone in this community.
Researchers and medical industries need to know about OUR experiences and OUR opinions. And you can believe it: they do listen. You will be able to see the results in real time, and your voice will be part of the poll trends. No longer will a member of your care team be able to say “I never heard of that”. Because you will inform them that the poll that your fellow members in the Ben’s Friends community certainly have heard of that!
We hope you are as excited about these new directions as we are. If you have any comments, suggestions or questions, we’d love to hear them. Just send us an email at modsupport@bensfriends.org. Or, share your comments with this community by tapping “Reply” and posting here.