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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.
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CDG Diagnosis Survey End Page
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HES Questionnaire End Page
Thank you for completing this questionnaire. If other individuals (a person with HES, caregiver or family member of a person with HES) would like to complete this questionnaire, continue to your Profile page. Select the survey link and then select 'Retake this survey'.
Sharing Partners
ABRALE - Associação Brasileira de Linfoma e Leucemia
Abrasta - Brazilian Thalassemia Association
Acoustic Neuroma Association
Adrenal Insufficiency United
Alagille Syndrome Alliance
American Partnership for Eosinophilic Disorders (APFED)
Association for Creatine Deficiencies
Bow Foundation
C.R.A.V.A.T.
Canavan Disease Research
Cardio-Facio-Cutaneous (CFC) International
CDG Care
Circadian Sleep Disorders Network
Cure GMI Foundation
cureCADASIL Association
Dandy-Walker Alliance, Inc.
FOD (Fatty Oxidation Disorders) Family Support Group
Geisinger Autism & Developmental Medicine Institute
International Essential Tremor Foundation
Jack McGovern Coats Disease Foundation
Jonah's Just Begun
KCNQ2 Cure Alliance
Kidney Cancer Association
Living With Trisomy 13
MdDS Balance Disorder Foundation
National Tay-Sachs and Allied Diseases Association
No Stomach for Cancer
Noonan Syndrome Foundation
PCDH19 Alliance
PMG Awareness Organization, Inc.
Potocki-Lupski Hope Project
PRISMS, (Parents and Researchers Interested in Smith-Magenis Syndrome)
Rasopathies Network
SAMSKARA
Small Cell Ovarian Cancer Foundation
Spastic Paraplegia Foundation
The Chagas Disease Foundation
The Charles E. Holman Morgellons Disease Foundation
The FPIES Foundation
The I Have IIH Foundation
The KAT6A Foundation
The National MPS Society
The Romberg Connection
Trisomy 18 Foundation
Turner Syndrome Foundation
University of Edinburgh
Vestibular Disorders Association
APRENDA MÁS
