Advocacy, Education & Empowerment

BFT_Pinterest

Get your sneakers ready and hit the road!

Starting in May, we invite you to participate in our monthly health challenge.

First challenge: walk (at least) 10,000 steps per day.

Check out our health challenge page for more information.

Francis + Sam

Francis Collins and Sam Berns at TEDMED – Repurposing Drugs, Replacing Animal Models, Rocking Out

Francis Collins chats with 15-year-old progeria patient, Sam Berns, on stage about the complexities of life with Progeria.

Follow @geneticalliance

-

# 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

What is this?

-

# 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

What is this?

Network

Meet Your Neighbors

FACES Autism Support Network focuses on early intervention, education, advocacy, and support for families dealing with Autism Spectrum Disorder in the South Jersey area. Founded in 2002, FACES (Families for Autistic Children Education & Support) leads programs including family support, sibling support, conferences, and education services, and there are now over 250 families involved.

View all our "neighbors"
Become a "neighbor"!

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.

High Court Sides With Generic Drugmakers In Patent Case

The US Supreme Court (SCOTUS) ruled that generic drug companies could file legal counterclaims against name brand drug manufacturers, allowing generic manufacturers to challenge the way drug companies define their patents to the FDA.

Generic companies assert that brand-drug companies are describing their patents broadly to shut out competition. Generic drug companies need FDA approval to bring their product to the market, and the approval is based partly on drug use codes submitted by drug manufacturers, without independent verification.

In this case, SCOTUS ruled that the generic manufacturer, Caraco Pharmaceuticals, could challenge the scope of the patents held by Novo Nordisk for the diabetes medication Prandin.