Important, do not skip. next step?

[BigSail]

(This community is huge, next step?)

I found out the Reddit page and i wrote this massage, then i found this page and I wanted to post here again with more details .

If there is a way for us as a community to communicate, donate, and send messages to facilities and researchers around the world who are knowledgeable and concerned about the disease, in order to encourage and support them in any way they need, it can lead to something significant in the future.

As a first step, for example, we can create a blog that includes all the latest research developments and a page for personal experiences where patients who are willing to participate and collaborate can share details of their experiences. This way, the research can connect with patients who are suitable for their studies and are geographically close to them.

English is not my first language, unfortunately, so it's quite challenging for me. But we should all collaborate in this beautiful community to create something meaningful.

Imagine there is a blog that has a page for the latest research updates from around the world and another page for patient contributions, where they can share details of their experiences, including their ages and backgrounds, without violating their privacy, of course. This would help connect patients with researchers around the world.

its a simple blog where patients could join and answer main questions then write about thir experience, what they feel and what medicine work and what not and what triggers the BD , when it’s started, how doctors know it was BD, what helps them what not . Etc researchers can scan through patients details . And can simply ask to contact them.

I guess first step is creating a team of famous pages moderators or people who knows the community well. And someone who knows about researchers and facilities, how to reach out and etc. and finally a programmer or I guess know a days you can create a website within a minute with services like wordpress etc.

I talk so much sorry but I’m passionate about the subject, finally picture will be:

Main website where all pages and groups can collaborate, so it’s more powerful and more organised. With the continuity of current pages and groups because there are important and helpful.

One page for latest news about BD.

Other Page where you scroll throw BD patient experiences and details.(the patient can choose if he is open for communication or not) and maybe a page where BD loves ones can share their point of view, that’s could be helpful.

what do you guys think?

[Ayea]

Take a look at the Behcets UK website. It is an excellent resource and it does a lot of what you are suggesting,

behcetsuk.org/

For example, here is their section on Research News...

behcetsuk.org/research/

Perhaps contact them and see if you can help out or go to one of their events and speak to them in person?

behcetsuk.org/get-involved/

Their website was incredibly helpful to me when I was first diagnosed.

I had been struggling with Behcets for over a decade and never knew what the hell was going on until finally a excellent specialist told me it was Behcets. When I got home I immediately searched for it and found the Behcets UK website and it told me everything I needed to know - all the crazy stuff I had been suffering with, was all one thing!

I also found out about the Behcets Centres from their website - my GP didnt even know they existed!

They are doing a great job, support them if you can!

[BigSail in reply to Ayea]

Thank you that was very helpful. Thank god there is good people around us, i still think we must campaign and spread our message more. I’m thinking about an annual competition where people can (design,draw,create films) so it helps spread the message.I hope BD community keep growing.

[RAJA_]

yes I am ready to support all the way big sail! Thankyou v much for support and kids words of encouragement.