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our voice matters. The Invitae Connect Patient Insights Network (PIN) amplifies the voice of patients to help researchers and drug developers find better treatments, faster. Register now to become part of a research-ready PIN with participants from around the world.
 
We believe that patients own their data and have the right to share it in a manner that protects their privacy. Through the Invitae Connect PIN, we connect participants with advocacy organizations, clinicians, researchers and drug developers for the benefit of all.
 
A Patient Insights Network, or PIN, is more powerful than a traditional patient registry. It is an interactive, online platform for surveying disease communities, uploading medical records, tracking health outcomes and sharing de-identified disease data. It’s HIPAA compliant, secure and research-ready.
 
This PIN can help generate research and academic interest. It can expedite trial recruitment and ultimately generate more progress toward treatments and cures. By adding your family's information to this PIN, you help amplify the patient's voice to bring solutions to the larger community. 
 
Invitae is a genetic information company whose mission is to bring genetic information into mainstream medical practice to improve the quality of healthcare for billions of people. 

Sanfilippo

Contact Us - Sanfilippo

America

Abby Grace Foundation

Wendy Furgeson
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Ben's Dream

Stuart Sideman
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Ph: 617-899-4158

Jonah's Just Begun-Foundation to Cure Sanfilippo Inc. 

Jill Wood
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Ph: 347-689-2186

National MPS Society

Stephanie Bozarth
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Australia

Sanfilippo Childrens Foundation 

Megan Donnell
This email address is being protected from spambots. You need JavaScript enabled to view it.

France

Sanfilippo Sud 

Guilhain Higonnet, France
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Poland

Adam and Lea Versus Sanfilippo

Krzysztof and Tola Kusidlo
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Mały Maciek i Wielcy Czarodzieje 

Arleta Feldman, Poland
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Portugal

Sanfilippo Portugal

Raquel Marques
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Spain

Foundation Sanfilippo

Marta Vazquez
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Sanfilippo Barcelona

Belen Garcia, Spain

Contact Us - ConnectMPS

America

Abby Grace Foundation

Wendy Furgeson
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Ben's Dream

Stuart Sideman
This email address is being protected from spambots. You need JavaScript enabled to view it.
Ph: 617-899-4158

Jonah's Just Begun-Foundation to Cure Sanfilippo Inc. 

Jill Wood
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Ph: 347-689-2186

National MPS Society

Terri Klein
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Ph: 877-MPS-1001

Australia

Sanfilippo Childrens Foundation 

Megan Donnell
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France

Sanfilippo Sud 

Guilhain Higonnet, France
This email address is being protected from spambots. You need JavaScript enabled to view it.

Poland

Adam and Lea Versus Sanfilippo

Krzysztof and Tola Kusidlo
This email address is being protected from spambots. You need JavaScript enabled to view it.

Mały Maciek i Wielcy Czarodzieje 

Arleta Feldman, Poland
This email address is being protected from spambots. You need JavaScript enabled to view it.

Portugal

Sanfilippo Portugal

Raquel Marques
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Spain

Foundation Sanfilippo

Marta Vazquez
This email address is being protected from spambots. You need JavaScript enabled to view it.

Sanfilippo Barcelona

Belen Garcia, Spain

Switzerland

Fondation Sanfilippo Suisse

Isabelle Costes

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Partner Organizations

America

Abby Grace Foundation

Abby Grace Foundation

Wendy Furgeson
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Ben's Dream

Ben's Dream

Stuart Sideman
This email address is being protected from spambots. You need JavaScript enabled to view it.
Ph: 617-899-4158
Cure Sanfilippo Foundation

Cure Sanfilippo Foundation

Contact@CureSanfilippoFoundation.org
PO Box 6901
Columbia, SC 29260
JLK Sanfilippo Research Foundation

JLK Sanfilippo Research Foundation

JLK Sanfilippo Research Foundation
PO Box 564
Belmont, MA 02478
This email address is being protected from spambots. You need JavaScript enabled to view it.
Jonah's Just Begun-Foundation to Cure Sanfilippo Inc.

Jonah's Just Begun-Foundation to Cure Sanfilippo Inc.

Jill Wood
This email address is being protected from spambots. You need JavaScript enabled to view it.
Ph: 347-689-2186
National MPS Society

National MPS Society

Mark Dant
This email address is being protected from spambots. You need JavaScript enabled to view it.
Ph: 877-MPS-1001
Ryan MPS

The Ryan Foundation

www.ryanfoundation.net
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Ph: 214-870-RYAN
Team Sanfilippo Foundation

Team Sanfilippo Foundation

PO Box 1152
Ronkonkoma, NY 11779
518-879-6571
The Children's Medical Research FoundationCure Kirby

The Children's Medical Research Foundation, Inc.

P. O. Box 70
Western Springs, Illinois 60558
This email address is being protected from spambots. You need JavaScript enabled to view it.

Argentina

Association MPS Argentina

Association MPS Argentina

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Australia

Sanfilippo Children's Foundation

Sanfilippo Children's Foundation

Megan Donnell
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Brazil

Sanfilippo Brasil

Sanfilippo Brasil

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Belgium

Belgium

Boks VZW Belgium

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Canada

Sanfilippo Children's Research Foundation - A life for Elisa

The Sanfilippo Children's Research Foundation

41 Gwendolen Avenue, Willowdale
Ontario Canada M2N 1A1
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Canadian

Canadian MPS Society

Kim Angel
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Colombia

Fundacion Sanfilippo Colombia

Fundacion Sanfilippo Colombia

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Ph: +57 305-363-1478

France

Le combat de Haitem contre Sanfilippo

Le combat de Haitem contre Sanfilippo

1 bis rue Saint Pierre
93110 Rosny sous bois
France
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SS for PCR

Sanfilippo Sud

Guilhain Higonnet
France
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Hong Kong

Hong Kong

Hong Kong MPS Mutal Aid Group

G/F, Wang Lai House
Wang Tau Hom Estate
Kowloon
Hong Kong
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Mexico

Sanfilippo Red

RED Sanfilippo Fundacion

León Gto., Mexico
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Teléfono.: +52 (477) 1092133
Teléfono.: +52 (477) 2802408

New Zealand

ISMRD - The International Advocate for Glycoprotein Storage Diseases

ISMRD - The International Advocate for Glycoprotein Storage Diseases

Jenny Noble
167 Hollister Lane
Ohauiti, Tauranga, New Zealand
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Ph: +64-7-5448868

Poland

Adam and Lea Versus Sanfilippo

Adam and Lea Versus Sanfilippo

Krzysztof and Tola Kusidlo
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Mały Maciek i Wielcy Czarodzieje

Mały Maciek i Wielcy Czarodzieje

Arleta Feldman
Poland
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Portugal

Sanfilippo Portugal

Sanfilippo Portugal

Raquel Marques
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Spain

Foundation Sanfilippo B

Foundation Sanfilippo B

Marta Vazquez
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Sanfilippo Barcelona

Sanfilippo Barcelona

Belen Garcia, Spain
Stop Sanfilippo Fundacion

Stop Sanfilippo Fundacion

Av. Camino de Santiago, 45
28050 Madrid, Spain
610 893 873/637 822 377

Switzerland

Fondation Sanfilippo Suisse

Fondation Sanfilippo Suisse

Isabelle Costes
Fondation Sanfilippo Suisse
2, rue de Jargonnant
CH-1207 Genève
Switzerland
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