Contribute to MED13L research in a city near you.

A convenient way to participate

Contribute to MED13L research in a city near you.

The MED13L Foundation partners with the Combined Brain Road Show to bring biospecimen collection—blood, stool, and saliva—directly to rare disease family meetings across the country.
Fully trained staff collect samples onsite, allowing MED13L families to participate in research without additional travel or clinical visits. By collaborating with other rare neurodevelopmental communities, we reduce costs, minimize burden, and accelerate progress through a shared biorepository.


find a city near you

Hosted by: Tatton Brown Rahman Syndrome (TBRS) Community — San Antonio, TX


March 19 (10:00am–6:00pm)
March 20 (8:00am–4:00pm)
Morgan’s Wonderland Camp
23400 Cibolo Vista
San Antonio, TX 78261

Hosted by: NR2F1 Foundation — Orlando, FL


April 9–10
Sheraton Orlando Lake Buena Vista Resort
12205 S Apopka Vineland Rd
Orlando, FL 32836

Hosted by: Hereditary Neuropathy Foundation — Ellicott City, MD


April 17–18
Turf Valley Resort
2700 Turf Valley Rd
Ellicott City, MD 21042

Hosted by: Stiff Person Syndrome Research Foundation — Denver, CO


June 13–14
University of Colorado Anschutz Medical Campus
Denver, CO

Hosted by: United Mitochondrial Disease Foundation — Orlando, FL


June 18–19
Renaissance Orlando at SeaWorld
6677 Sea Harbor Dr
Orlando, FL 32821

Hosted by: Mowat Wilson Syndrome Foundation — Concord, NC


June 24–25
Great Wolf Lodge
10175 Weddington Rd
Concord, NC 28027

Hosted by: KDM5C KARES Foundation — Ann Arbor, MI


June 26–27
University of Michigan
Ann Arbor, MI

Hosted by: RARE Hope — Boston, MA


June 27–28
Location TBD

Hosted by: GLUT1 Deficiency Foundation — Asheville, NC


July 14–15
Embassy Suites Downtown Asheville
192 Haywood St
Asheville, NC 28801

Hosted by: GRIN2B Foundation — Bethesda, MD


July 17
Bethesda Marriott
5151 Pooks Hill Rd
Bethesda, MD 20814

Hosted by: STXBP1 Foundation — Philadelphia, PA


July 17–18
Location TBD

Hosted by: ZTTK SON-Shine Foundation — Cambridge, MA


July 18
Boston Marriott Cambridge
50 Broadway
Cambridge, MA 02142

Hosted by: YBRP, Inc — Galveston, TX


July 20–21
Location TBD

Hosted by: CTNNB1 Connect & Cure — Boston, MA


October 8–9
Location TBD

Hosted by: Foundation for Hao-Fountain Syndrome — Philadelphia, PA


October 9–10
Location TBD

Hosted by: SETBP1 Society — Austin, TX


November 7
Location TBD

Hosted by: Project CASK — Houston, TX


November 11
Jan and Dan Duncan Neurological Research Institute
Texas Children’s Hospital
1250 Moursund St
Houston, TX 77030

Hosted by: SLC6A1 Connect, CURE GABA-A & Cure SYNGAP1 — Denver, CO


December 3–4
Location TBD

If you are interested in participating in one of the following biospecimen collection sessions, please review the dates, locations, and hosting organizations below.
To express interest or request additional information, email:
kbboychuck@med13l.org


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Every dollar adds a piece to progress for the MED13L community.