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We are excited to announce that we have partnered with Combined Brain! They are a non-profit consortium led by patient advocacy foundations, working with the clinicians, researchers and pharmaceutical firms that are developing treatments for the disorders they represent. Part of our partnership is the use of their biorepository to collect PCDH19 samples. This allows The Alliance to leverage a large and professionally run biorepository and share samples with researchers and industry professionals interested in developing treatments for PCDH19. Please consider participating in this research by attending a roadshow and providing your sample, if possible.

Together WE will create change! 




GLUT1 Deficiency Conference: August 26th, 9am-5pm (Embassy Suites, 13700 Conference Center Drive South, Noblesville, IN 46060)

IRF2BPL Foundation Conference: September 22nd (Home 2 Suites by Hilton, 7145 Liberty Centre Drive, Liberty Township, OH 45069) 

KCNQ2 Cure Alliance Conference: September 29th 2023 (Hilton Hotel Chicago 300 E Ohio St, Chicago, IL 60611)

Rory-Belle Foundation Conference: October 1st, 9am-5pm (13550 Commerce Blvd Rogers, MN 55374)

Prader-Willi Syndrome/USP7 Foundation Conference: October 5th-6th (1672 Lawrence St, Denver, CO 80202) 


TBRS Community Conference: October 12th-13th 2023 (Morgan’s Wonderland, 5223 David Edwards Dr, San Antonio, TX 78233)

COMBINEDBrain Meeting: October 16th, 2023 (Washington DC)

FAM177A1 Conference October 29th 2023, 9am-5pm (2737 77th Ave Se Suite 101 Mercer Island, WA 98040)

ADNP Syndrome Conference: October 30th-November 1st 2023 (Los Angeles, CA)

Angelman Foundation Conference : November 2023 (Miami, FL) *POTENTIAL*

SYNGAP1 Research Fund Conference: December 1st-3rd 2023 (8978 International Drive Orlando, FL, 32819)

SLC6A1 Connect Conference : December 1st-3rd 2023 (9700 International Dr, Orlando, FL 32819)

Please email Julie Walters for more details at

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