Gorlin Syndrome Alliance

The mission is to thoughtfully support, comprehensively educate & aggressively seek treatments & a cure for Gorlin syndrome, its manifestations & sporadic BCC's

[Gorlin Syndrome Alliance @gorlin_alliance]

The Gorlin Syndrome Alliance has received the letter from PellePharm, who is conducting the clinical trial for topical agent Patidegib for treatment of BCC's. Our collaboration with PellePharm is strong, & their desire to help us even stronger. https://t.co/WcR8FMeSrB

[Gorlin Syndrome Alliance @gorlin_alliance]

Gorlin Syndrome Alliance

#GivingTuesdayNow is a new global day of giving & unity. In addition to 12/1/2020.
Click here to donate: https://t.co/BfDNtGlc4H
Image may contain: possible text that says 'GIVING TUESDAY NOW'

[Gorlin Syndrome Alliance @gorlin_alliance]

#GivingTuesdayNow is a new global day of giving and unity taking place tomorrow, May 5 2020. The GSA works to provide hope for all affected patients and their families though programs of research, support and information. Join the movement! Donate here: https://t.co/BfDNtGlc4H

[Gorlin Syndrome Alliance @gorlin_alliance]

On 04/28/20, Julie Breneiser, Executive Director of Gorlin Syndrome Alliance was a presenter in a webinar sponsored by NORD on “Building Relationships Between Patient Advocacy Groups and Pharma”. Is available to view on the youtube link below.
https://t.co/opThnTSzBl

[Gorlin Syndrome Alliance @gorlin_alliance]

Julie Breneiser, Executive Director of Gorlin Syndrome Alliance presented in a NORD webinar with Camilla Krogh Lauritzen, Chief Patient Officer of LEO Pharma. to watch, you can register via the link below. Insert the “GSA” as the Company Name.
https://t.co/XIwG2fn8F7…

[Gorlin Syndrome Alliance @gorlin_alliance]

We just heard from Pellepharm that the first patient was dosed in this pivotal Phase 3 clinical trial of Patidegib Topical Gel, 2%, vs. vehicle gel in patients with Gorlin Syndrome. The Phase 3 study is intended to assess the safety and efficacy of... https://t.co/OGQhLD3PZz

[Gorlin Syndrome Alliance @gorlin_alliance]

The planned sites for the Phase III Patidegib 2% topical gel clinical trial, sponsored by PellePharm, are now listed on our website. Visit https://t.co/XodaytbcpZ for more info.

Please note, the participating sites in the US are divided into three... https://t.co/XodaytbcpZ

[Gorlin Syndrome Alliance @gorlin_alliance]

https://t.co/lgOygmnSbc

[Gorlin Syndrome Alliance @gorlin_alliance]

https://t.co/llLR1CBhCA

[Gorlin Syndrome Alliance @gorlin_alliance]

https://t.co/CzfvhEZwUY

[Gorlin Syndrome Alliance @gorlin_alliance]

The BCCNS Alliance is the only organization to host face-to-face one-day regional meetings and a three-day national conference where patients with BCCNS/Gorlins and physicians can connect with each other in person. Help us expand these connections by making a donation today!

[Gorlin Syndrome Alliance @gorlin_alliance]

Why give this #GivingTuesday? We maintain the only patient-inputted BCCNS/Gorlins Registry, promote clinical trials for better treatments and support research to find a cure. Click the link below to make an impact today!

[Gorlin Syndrome Alliance @gorlin_alliance]

Just a reminder tomorrow is #GivingTuesday! Help us expand the reach of the BCCNS Alliance by making a donation today! Or, consider hosting your own Facebook fundraiser and have all your donations matched by Facebook & Paypal.

[Gorlin Syndrome Alliance @gorlin_alliance]

Just a reminder to our Cyber Monday shoppers to make your purchase through https://t.co/pCl8urVua4 and choose the BCCNS Alliance. It's super easy and makes an impact on our one-of-a-kind organization! https://t.co/N2h19JmIzp

[Gorlin Syndrome Alliance @gorlin_alliance]

Looking for a way to give back this #GivingTuesday? This year, we are fundraising to expand the reach of our BCCNS Alliance. Consider donating or creating your own fundraiser to help us in this goal.

Did you hear the news? Facebook & Paypal are... https://t.co/oS5UMNgkNi

[Gorlin Syndrome Alliance @gorlin_alliance]

Are you eyeing any upcoming Holiday shopping deals? Just a reminder that if you are shopping on Amazon this weekend, we ask that you shop at https://t.co/pCl8urVua4 and choose the BCCNS Alliance. We receive a portion of your sale and you get... https://t.co/N2h19JmIzp

[Gorlin Syndrome Alliance @gorlin_alliance]

Wishing you and your family a very happy Thanksgiving!

[Gorlin Syndrome Alliance @gorlin_alliance]

This industry news alert is hot off the press: LEO Pharma and PellePharm Announce $760 Million Collaboration to Advance Innovative Therapies for Rare Skin Diseases. Learn more: https://t.co/KGq6oPulXV https://t.co/KGq6oPulXV

[Gorlin Syndrome Alliance @gorlin_alliance]

It’s official! The BCCNS Registry is LIVE. Click https://t.co/ISyidLPYly to enroll today and help move science and BCCNS research forward. The BCCNS Registry will safely house patient-inputted data in one page. Now, clinicians will... https://t.co/cN0Ck4DAKc

[Gorlin Syndrome Alliance @gorlin_alliance]

Jean and Madeline represented the BCCNS Alliance at this year's #NORDSummit and had the chance to meet with other patient advocacy organizations, industry partners, FDA and NIH officials. Click the video below to learn Jean's three takeways from this... https://t.co/2IjymUrvTd