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SLC6A1 Europe promuove la ricerca per la mutazione SLC6A1

Associations around the world

 

The foundation of the SLC6A1 EUROPE Alliance was largely made possible thanks to Lindsay Randall, founder and CEO of SLC6A1 CONNECT UK and mother of Arthur and Eden, both affected by SLC6A1 neurodevelopmental disorder (SLC6A1-NDD).

 

Thanks to her vision, determination, and energy, she has played a key role in establishing our Alliance, which continues to grow by bringing together families, doctors, and researchers across Europe.

We are deeply grateful to Lindsay for her remarkable contribution and unwavering commitment.

For more information about the SLC6A1 EUROPE Alliance, please visit: www.slc6a1europe.org

 

Amber Freed is the founder and CEO of SLC6A1 CONNECT, the American and global patient association that has had, and continues to have, a significant impact on advancing SLC6A1 research.

Amber is the mother of twins, Riley and Maxwell. Maxwell was diagnosed with the SLC6A1 mutation at 18 months of age. With extraordinary determination, Amber turned the pain of her son’s diagnosis into purpose and has since been tirelessly dedicated to the SLC6A1 cause.

Our community is profoundly grateful to Amber and to everyone who supports her daily for their incredible commitment.

For more information about the American association, visit:

www.slc6a1connect.org

With the continuous increase in diagnosed cases, interest in the SLC6A1 mutation is growing exponentially.

 

We are pleased to see the rising number of scientific publications and the growing participation of patient representatives around the world.

 

Alongside the well-established SLC6A1 Kids Australia, new associations are emerging in Latin America and in many other regions across the globe.

 

 

SLC6A1 CONNECT runs the SLC6A1 Family Support Group, the largest Facebook group for families affected by the mutation. The group is for parents and relatives only. It provides a safe place to share experiences, ask questions, receive support, and stay informed about research, therapies, and scientific developments.

The group is private: to join, a request must be submitted and a few short questions answered.

SLC6A1 EUROPE

Ours is an alliance of various associations for the SLC6A1 mutation present in Europe and it includes:

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SWITZERLAND: SLC6A1 SWITZERLAND, SLC6A1 SCHWEIZ, SLC6A1 SUISSE, SLC6A1 SVIZZERA

Contact Person: Michelle Aldini Parise

IDI CHE-285.247.490

EU Funding & Tenders Portal, Participant Identification Code (PIC) 865281711

www.slc6a1switzerland.ch

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UNITED KINGDOM: SLC6A1 CONNECT UK/ARTHUR'S QUEST

Contact Persons: Lindsay Randall

CRN: 1185380

www.slc6a1connectuk-aq.org

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GERMANY: SLC6A1 DEUTSCHLAND

Contact Person: David Wulf e Lars Burgwinkel

www.slc6a1deutschland.org

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SPAIN: SLC6A1 SPAIN

Contact Person: Jordan Bastoni

NRA: 626808​

www.slc6a1-spain.org

FRANCE: ASSOCIATION SLC6A1 FRANCE

Contact Person: Aline Braillard

W75128179

​Facebook Support Group: https://lnkd.in/eUnngcWs

BELGIUM: VZW-GEN

Contact Person: Leyla Vardar

BCN: 0741415837

www.vzw-gen.be

NETHERLANDS: MEESTERBREIN

Contact Person: Haikje Verberk

RISN: 861025787

www.meesterbrein.info​​

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ITALY: SLC6A1 CONNECT ITALIA

Contact Person: Andrea de Colle

URR: 1127

www.slc6a1connectitalia.it​​

POLAND

Contact Person: Magda Fryska-Son

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PORTUGAL

Contact Person: Julia Ferreira

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ISRAEL

Contact Person: Ruth Jordana Keselman

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