Help Accomplish Our Mission
- Coordinate and collaborate with the global scientific community to understand the function of the MED13L gene in order to develop effective treatments and a cure for MED13L syndrome
- Increase medical community and public awareness of the complexity and potential severity of MED13L syndrome
- Provide educational and emotional support for those affected by MED13L syndrome
- Raise money to fund our goals

Putting MED13L ON THE MAP
As the parent of a child with a MED13L mutation, we ask that you please put yourself and your child “on the map” by reaching out and letting us know you exist (even anonymously, if you prefer). You can submit their story or show us where you are on the map to connect to those that may be nearby.

Dylan and Logan, NJ
TJ, DE
Brooklyn, AL
Maiya, NE
Ethan, TX
Taylor, KY
William, IL
Joey, TX
Paris, MS
Max, OH
Molly & Julia, AZ
Stephanie, TX
Lindsay, Louisiana
Evan, TX
Melissa, OH
Angel, CA
Shauna, Wisconsin
Bowen | Dallas, TX
Joe, MD
Manori, PA
CJ, PA
Dan, NJ
Pietro, Kansas
Ruth | Washington DC, Maryland
CJ, PA
Donovan, Kansas
The Williams Family | Houma, Louisiana
Makayla Stillwagon | Cuyahoga Falls, Ohio
Adeline | Saugerties, NY
Bryson | Harrisburg, PA
Maya | Miami, FL
Collin Boychuck | Park ridge, Il
Ashley | Burlington, NJ
Ana | Chippewa, WI
Maggie D. | Severna Park, Maryland
DeBoy | Severna Park, Maryland
Sabrina Bagley | Chanute, Kansas
Amayah Houghton | Chanute, Kansas
Amy Kesler | Rochester Hill, MI
Amy Kesler | Rochester Hill, MI
Trinity Stewart | Deltona, FLA
Amir | Fort Worth, TX
Anna Smelkova | Arlington, Massachusetts
Outside of the USA (larger map coming soon):
- Amanda, UK
- Ayeshia, UK
- James, Australia
- Bryan, UK
- Cara, Canada
- Susana, Portugal
- Faten, Abu Dhabi/UAE
- Baitar, Romania
- Giurescu, Romania
- Paul, España
- Pietro, Italia
- Adriana Maria - Camaragibe, Pernambuco
- Panić Petar - 51000 Rijeka, Croatia
- Felix | Arroyomolinos, Madrid
- Andreas | Tallinn, Estonia
- Camila | Buenos Aires, Argentina
- Milena | Katowice, Poland
- Lenka Cigankova | Bohusov, Czech republic
- Liam | Brighton, UK
- Myla-Rose | Plymouth, UK
- Ethan | London, Ontario, Canada
- Toov | Jerusalem, Israel
- Adi liber | Tel aviv, Israel
- Luca | Bologna, Italia
- Benjamin | Northumberland, UK
- Charlie | Northumberland, UK
- Eden | Be'er Sheva, Israel
- Ankur Bhatia | Toronto, Canada
- Kathrin Düker | Munich, Germany Bavaria
- Mirko Vianello | San Teodoro, Italy
- Federica Iacullo | Napoli State, Italy
- Nadia | Bolzano, Italy
- Stéphanie Lecointre | Laval, France
- Jordan | Rotterdam, Nederland
- Panić Petar | Rijeka, Croatia, Europa
- Jaimee-Lynne | Springwater, Ontario
- Lilli | Denmark, Europa
- Soon Wen Jin | Kuala Lumpur, Malaysia
- Tash Karst | Canterbury, New Zealand
- Claudia | Santiago, Chile
- Matteo Ethier | Ontario, Canada
- Michelle Scott | Dunbar, East Lothian, UK
- Will | China
- Tamara| Hungary
- Rafaella Padilla | Linares, Maule
- Bruno Marques | Marinha Grande, Leiria, Portugal
Spreading awareness is one of THE MOST IMPORTANT THINGS YOU CAN DO FOR YOUR CHILD, and it is the only way we will ever be able to advocate for new MED13L treatments and therapies.


Find a Cure!
Did you or your child just receive a new diagnosis of MED13L? If so, please know you are not alone!