Advocacy, Education & Empowerment

First Feature

Meet Collaborate | Registries for All Diseases

More than ever, the world needs open and easy access to the data that will give all of us options for treatments for serious diseases.

Read our latest blog post and tell us what you think.

Progeria Research

Now accepting applications for the 2013 Consumer Task Force!

The Consumer Task Force was created to engage stakeholders with an interest in newborn screening policies, activities, and current events.

Click here to download the complete 2013 Challenge Award Request for Applications (pdf).

Learn more here.

BioBank

Genetic Alliance wants to hear from you about your experience with biobanks

If you are a current biobank participant and or may be interested in participating in biobanking in the future, take the survey here!

Consumer Task Force

First-ever Treatment for Progeria Discovered!!

The clinical trial, completed at Boston only six years after scientists identified the cause of Progeria, showed that the FTI lonafarnib had a positive effect on weight gain, hearing, bone health and, most importantly, cardiovascular health.

Read the press release here!

Follow @geneticalliance

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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# A B C D E F G H I J K L M N O P Q R S T U V W X Y Z

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Network

Meet Your Neighbors

The American Academy of Pediatrics is an organization of 60,000 pediatricians committed to the optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. The AAP runs the National Center for Medical Home Implementation and the Genetics in Primary Care Institute, of which Genetic Alliance is a partner.

Become a "neighbor"!
View our neighbor archive

Policy

Your Data Are Not a Product

A new, experimental bioethics protocol, the Portable Legal Consent for Common Genomics Research (PLC-GCR), provides a mechanism for researchers to use existing medical and genomic data from research participants in their experiments. Data collected in experiments involving people are tightly controlled, and access is highly restricted due to ethical and legal concerns.

The new PLC-GCR protocol attempts to shift the paradigm by allowing informed and obliging volunteers to provide their genomic and medical data to be publicly available for use by other researchers. Any data in the PLC-GCR database will be anonymized, and researchers who use the data must adhere to strict confidentiality principles to protect the identities of the volunteers.

Genetic Alliance will be using the PLC-GCR for the THAT’S MY DATA! project launching in late April – stay tuned!

Sage Bionetworks Congress

The 3rd Annual Sage Commons Congress, Building Better Models of Disease Together, was held April 20-21 in San Francisco. The Congress explored how early investments in technical and legal data sharing platforms are beginning to pay off in faster science, increased patient engagement, and disruptive projects that can shake up the entire pharmaceutical industry.

The Congress program included deep dives into the Synapse technical platform and Portable Legal Consent systems that together make data about individual research participants the key to large-scale disease research and the open science movement.

View all of the Congress sessions and Congress Unplugged!

New Federal Agency Helps the Aged and Disabled

The Obama Administration has created a new agency within the U.S. Department of Health and Human Services (HHS), the Administration for Community Living (ACL). This agency is tasked with aiding seniors and people with disabilities living in a community. The new agency ties together three other federal agencies, the Administration on Aging, the Office on Disability, and the Administration on Developmental Disabilities.

The ACL seeks to encourage better access to support, and targets initiatives towards groups with specific disabilities. HHS hopes that the ACL will enhance the lives of those with disabilities and provide them with tools to get the help they need in healthcare, housing, employment, and education. ACL will also help them to participate and cultivate relationships with the community.

US Translational-Research Center Fund

The US National Center for Advancing Translational Sciences (NCATS) has awarded 17 grants to create artificial organs for drug screening. These complex mini-machines are generally the size of a microscope slide or smaller, and are often connected to all sorts of tubes and wires to help to mimic human physiology. A lung on a chip, for example, puts blood-vessel cells on one side of a membrane and lung-tissue cells on the other. Tiny pumps and vacuums model breathing and blood flow.