Hosting PAG(s)

Dates

Location

Collection Site Address

Tatton Brown Rahman Syndrome (TBRS) Community

March 19th: 10am-6pm, March 20th: 8am-4pm*

San Antonio, TX*

Morgan’s Wonderland Camp, 23400 Cibolo Vista, San Antonio, TX 78261

NR2F1 Foundation

April 9th: 8am-6pm, 

April 10th: 8am-4pm*

Orlando, FL*

Sheraton Orlando Lake Buena Vista Resort, 12205 S Apopka Vineland Rd, Orlando, FL 32836

Hereditary Neuropathy Foundation

April 17th: 8am-5pm, 

April 18th: 8am-3pm 

Ellicott City, MD

Turf Valley Resort, 2700 Turf Valley Rd, Ellicott City, MD 21042

KCNT1 Epilepsy Foundation, & CDG CARE

April 24*

Orlando, FL*

Hilton Orlando Lake Buena Vista - Disney Springs® Area

1751 Hotel Plaza Boulevard, Lake Buena Vista, FL 32830, US

TESS Research Foundation for SLC13A5 Epilepsy

April 30: 8am-6pm

May 1: 7am-3pm**

Menlo Park, CA**

Sheraton Hotel - Board Room, 625 El Camino Real, Palo Alto, CA 94301, US

Stiff Person Syndrome Research Foundation

June 13-14

Denver, CO

University of Colorado Anschutz Medical Campus, Denver, CO

United Mitochondrial Disease Foundation

June 18-19*

Orlando, FL*

Renaissance Orlando at SeaWorld, 6677 Sea Harbor Drive, Orlando, FL 32821

Mowat Wilson Syndrome Foundation

June 25-26

Concord, NC

Great Wolf Lodge, 10175 Weddington Rd, Concord, NC 28027

KDM5C KARES Foundation

June 26-27*

Ann Arbor, MI*

University of Michigan, Ann Arbor, MI

RARE Hope

June 27-28*

Boston, MA*

The Boston Marriott Newton, 2345 Commonwealth Avenue, Newton, MA 02466

CANCELED

July 14-15*

Asheville, NC*

Embassy Suites Downtown Asheville, 192 Haywood Street, Asheville, North Carolina, 28801

GRIN2B Foundation

July 17**

Bethesda, MD**

Bethesda Marriott, 5151 Pooks Hill Rd, Bethesda, MD 20814

STXBP1 Foundation

July 17-18

Philadelphia, PA

Hilton Philadelphia at Penn's Landing, 

201 S Christopher Columbus Blvd, Philadelphia, PA 19106

ZTTK SON-Shine Foundation

July 18**

Boston, MA**

Boston Marriott Cambridge, 50 Broadway, Cambridge, MA 02142

YBRP, Inc

July 20-21*

Galveston, TX*

TBD

Cri du Chat Research Foundation

July 24 (TBD)**

San Antonio, TX**

Marriott Riverwalk Hotel 889 E Market St, San Antonio, TX 78205

CTNNB1 Connect & Cure

October 8-9

Boston, MA

TBD

Foundation for Hao-Fountain Syndrome

October 9-10*

Philadelphia, PA*

TBD

SETBP1 Society

November 7**

Austin, TX**

DoubleTree Suites by Hilton Austin Downtown Capital, 303 W 15th St, Austin, TX 78701

Project CASK

November 11**

Houston, TX**

Jan and Dan Duncan Neurological Research Institute at Texas Children's Hospital. 1250 Moursund St, Houston, TX 77030

SLC6A1 Connect, CURE GABA-A, & Cure SYNGAP1

December 3-4

Denver, CO

TBD