ucdparegistry.patientcrossroads.org
UCD and PA International Patient Registry
https://ucdparegistry.patientcrossroads.org/index.php
UCD and PA International Patient Registry. UCD International Patient Registry. PA International Patient Registry. About National Urea Cycle Disorders Foundation. About Propionic Acidemia Foundation. Urea Cycle Disorder International Patient Registry. Propionic Acidemia International Patient Registry.
jonahsjustbegun.blogspot.com
Jonah's Just Begun: January 2015
http://jonahsjustbegun.blogspot.com/2015_01_01_archive.html
Thursday, January 8, 2015. Staring fear in the face. I suppose it’s time to face my fears. I realize now by working my brain into a grave that I have been running from Sanfilippo and my fear that it will take Jonah. It’s time that I turn around and stare Sanfilippo down. You’re not taking my kid. I look at Jonah and I see all the way to his soul. I love every bit of him. Sanfilippo is part of him it’s written in his DNA. So does that mean I love Sanfilippo too? Am I allowed to be happy? I’m thinkin...
ldconnect.patientcrossroads.org
LD Connect Registry
https://ldconnect.patientcrossroads.org/index.php
Data Access and Publication Policy. Research Studies and Trials. By registering, your information will be used to move forward research and clinical trials that could lead to future treatments and cures for all types of Lipodystrophy. Get information on the latest registry-related news, including ongoing efforts to advance research and increase the quality of life of people living with Lipodystrophy. Download the Registry Brochure.
genomeconnect.org
Connect @ PatientCrossroads - GenomeConnect
https://www.genomeconnect.org/about-connect/geonmeconnect.html
Patients are the experts about their medical history and genetic information, and GenomeConnect was developed to empower patients to help researchers and clinicians in the effort to understand the genetic contribution to health and disease. GenomeConnect is a not-for-profit project developed by the Clinical Genome (ClinGen) Resource to engage patients as partners in data sharing efforts. People are interested in registries for different reasons:. GenomeConnect will help integrate the participants into on...
neuropathyreg.patientcrossroads.org
Global Registry for Inherited Neuropathies
https://neuropathyreg.patientcrossroads.org/index.php
Global Registry for Inherited Neuropathies. Accelerate Hereditary Neuropathy Research. By completing your profile, your information will be utilized to move forward research and clinical trials that could lead to future treatments and cures for various forms of Charcot-Marie-Tooth (CMT), Giant Axonal Neuropathy (GAN) and other hereditary neuropathies. Welcome to the Global Registry for Inherited Neuropathies! And Hannah’s Hope Fund for Giant Axonal Neuropathy ( GAN. Even within families with the same for...
simonsvipconnect.org
Home
https://www.simonsvipconnect.org/en/genetic-changes-were-studying/1q-duplication-information
News and About Us. Simons VIP Connect Staff. News Stories and Features. What is a genome? What is a gene? What is a genetic change? What is a CNV? Types of Gene Changes. Are all changes bad? Can genetic changes be inherited? Share Your Family's Story. Upcoming Meetings and Events. Other VIP-Approved Research Opportunities. 16p Learning About Learning. RESEARCH RESULTS NOW AVAILABLE TO PARTICIPATING FAMILIES! New genetic changes will be added this month! The Simons VIP research is aimed at better understa...
narcolepsy.patientcrossroads.org
Connect @ PatientCrossroads - Frequently Asked Questions
https://narcolepsy.patientcrossroads.org/about-connect/frequently-asked-questions.html
Explore the information in the FAQ to learn more about participating. Are you a researcher, healthcare provider or other professional? Sign up to view the de-identified data and learn about ways to partner with a registry at www.patientcrossroads.com. Learn about the registry. What is a registry? A registry is a place to store detailed medical information about people living with or at risk for a disease or other serious health condition. Who can join the registry? How does a CONNECT registry work? Let t...
3q29deletion.patientcrossroads.org
3q29deletion Registry
https://3q29deletion.patientcrossroads.org/index.php
Join the Registry today and help us better understand and improve the lives of individuals living with 3q29 deletion syndrome and 3q29 duplication syndrome. Welcome to the 3q29 Deletion and 3q29 Duplication Patient Registry. 3q29 Deletion Registry is Launched!