BardetBiedl Syndrome

Information on Bardet Biedl Syndrome, research, treatment and therapies

[BardetBiedl Syndrome @BardetBiedl]

@sqsupport We are trying to order square h/w for upcoming in-person fundraiser and our order keeps getting declined with no explanation. No response from email support. Please help--soon.

[BardetBiedl Syndrome @BardetBiedl]

8th grader fights for himself and others with rare syndrome: https://t.co/bPLESi8zqW

[Tamara Caspary (she, her, hers) @TamaraGenes]

Why do we do what we do? Last night at #FASEBCilia19 we were reminded as we met and mingled with Bardet-Biedl syndrome families. Thanks to the BBS family foundation for arranging such a memorable event! @timothyogden

[BardetBiedl Syndrome @BardetBiedl]

~Happy 2019~
As the new year begins it is time to start thinking about scheduling your visit to the Marshfield Clinic for BBS Clinical weeks.

Marshfield Clinic Health System is the only... https://t.co/3dKqlTogJm

[BardetBiedl Syndrome @BardetBiedl]

If you were unable to register for the webinar tonight with Rhythm about phase 3 of the setmelanotide study try this link!
https://t.co/A8RpqIDCMK https://t.co/A8RpqIDCMK

[BardetBiedl Syndrome @BardetBiedl]

Tomorrow is Giving Tuesday and we have so much to be thankful for.

We have made great strides in the fight to control weight in BBS. Phase 3 of the Setmelonotide study is ongoing right now!

We have raised funds for a BBS specific... https://t.co/MYhdzZF16S

[BardetBiedl Syndrome @BardetBiedl]

Announcement:
The BBS Foundation is hosting a webinar this Thursday night at 8pm Eastern with Rhythm Pharmaceuticals to discuss the Phase II setmelanotide trial for weight loss in BBS... https://t.co/alJeJ4rRqw

[BardetBiedl Syndrome @BardetBiedl]

It's a weekend of good news, and probably bad news.
On the good news front, Rhythm has received approval to begin enrolling patients for the Phase III trial of setmelanotide. You can read... https://t.co/I52OcG3WRs

[BardetBiedl Syndrome @BardetBiedl]

Sweet news from AMAZON ! They are increasing the charitable donation to 5% of your purchase when you use smile.amazon and have the Bardet Biedl Syndrome Foundation chosen. It is just until November 2nd...so we have just about 24 hours... https://t.co/pcyGwH8d1S

[BardetBiedl Syndrome @BardetBiedl]

Announcing the results from the 2nd Annual Rocky Ride for BBS research... https://t.co/n4DOJVKTBr

[BardetBiedl Syndrome @BardetBiedl]

We're going live in about 15 minutes to announce our total raised during the 2nd annual Rocky Ride...

[Peirce Pride @PeircePride]

Peirce is so proud of Nathanael Ogden! He biked 36 miles this weekend in support of Bardet Biedl Syndrome Foundation- Exton Park to the Phila Art Museum. #RockyRide. ⁦@WestChesterASD⁩

[BardetBiedl Syndrome @BardetBiedl]

https://t.co/BHXwUYUBLb

[BardetBiedl Syndrome @BardetBiedl]

https://t.co/3Tvxn4xZVu

[BardetBiedl Syndrome @BardetBiedl]

The 2018 Rocky Ride is here! https://t.co/VwSVJQcyuD https://t.co/VwSVJQcyuD

[BardetBiedl Syndrome @BardetBiedl]

If you're on the Foundation Fighting Blindness mailing list, you got a message today about writing to your congressperson about supporting a new bill to dramatically increase funding for blindness research. This is... https://t.co/bqYzQ07WxA…/find-your-representative

[BardetBiedl Syndrome @BardetBiedl]

Here's the link for the session with Dr. Nico Katsanis at 4:15pm Eastern https://t.co/domNYTyFjT

[BardetBiedl Syndrome @BardetBiedl]

Here's the link for tomorrow's 11am Eastern session on Vision Research: https://t.co/qQjsbzmSvS

This is the first time we're trying this with remote presenters, so please be patient with us if the technology doesn't work perfectly!

[BardetBiedl Syndrome @BardetBiedl]

Here is the link for the presentation this afternoon by Dr. Max Nachury, a leading researcher on BBS proteins. The session will begin at 4:30pm Eastern:
https://t.co/TmwCLvAgvH

[BardetBiedl Syndrome @BardetBiedl]

The technology appears to be working fairly well, so we will also plan on broadcasting presentations from Max Nachury this afternoon at 4:30 Eastern Time, and tomorrow on Vision Research at 11am Eastern, and from Dr. Nico Katsanis at 4pm Eastern. Check back here for more details.