Gorlin Syndrome 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. tinyurl.com/yakc5r9d

Gorlin Syndrome Alliance #GivingTuesdayNow is a new global day of giving & unity. In addition to 12/1/2020. Click here to donate: bit.ly/2tP7jjv Image may contain: possible text that says 'GIVING TUESDAY NOW'

#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: bit.ly/2tP7jjv

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. youtube.com/watch?v=pMR91o…

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. globalmeetwebinar.webcasts.com/starthere.jsp…

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... bit.ly/2CQLB3k

The planned sites for the Phase III Patidegib 2% topical gel clinical trial, sponsored by PellePharm, are now listed on our website. Visit bit.ly/2CsfRl7 for more info. Please note, the participating sites in the US are divided into three... bit.ly/2CsfRl7

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!

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!

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.

Just a reminder to our Cyber Monday shoppers to make your purchase through smile.amazon.com and choose the BCCNS Alliance. It's super easy and makes an impact on our one-of-a-kind organization! smile.amazon.com/ch/34-1915691

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... fb.com/fund/bccns

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 smile.amazon.com and choose the BCCNS Alliance. We receive a portion of your sale and you get... smile.amazon.com/ch/34-1915691

Wishing you and your family a very happy Thanksgiving!

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: conta.cc/2QY9kDM conta.cc/2QY9kDM

It’s official! The BCCNS Registry is LIVE. Click bit.ly/2Fp2N3S 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... youtube.com/watch?v=laVtur…

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... facebook.com/BCCNS/videos/2…