hydrocephalus advocacy

Hydrocephalus Action Network

A Possible Cut in Hydrocephalus Research Funding from Capitol Hill

Congress is currently debating a bill that could have major implications for hydrocephalus research through the Department of Defense CDMRP program.

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Hydrocephalus Action Network

It’s Time to Start Taking Action!

It’s time to start energizing our hydrocephalus grassroots network! Here are a few assignments for you to help make you a star advocate.

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NINDS Nonprofit Forum Hydrocephalus Registry

Partnering with Government to Shape Disease Research

HA played a key role at the annual NINDS Nonprofit Forum, which provides an opportunity for nonprofit leaders to engage in dialogue with NINDS staff.

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Hydrocephalus Association Webinar Speak Up!

Upcoming Webinar – Speak Up! Owning Your Condition

In this webinar, attendees will learn how to educate others about their condition, receiving tips and practical ways to share their story. They will also learn how to take charge and advocate for themselves and the condition.

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Advocacy Training for Youth Webinar NOW AVAILABLE

As a young adult, does my voice count? Can I make a difference in the hydrocephalus community? Listen to our latest webinar recording for youth to learn how.

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Hydrocephalus Teens on Capitol Hill

Finding Your Voice: Advocacy Training for Youth Impacted by Hydrocephalus

Ever thought of talking with your local, state or national government representatives about hydrocephalus but you were afraid to start the conversation, didn’t know how, or thought you were too young? Our upcoming webinar is for you!

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Teens with Hydrocephalus

Finding a Voice

Two teens living with hydrocephalus and one sibling share their first conference experiences attending the Hydrocephalus Association’s biennial National Conference on Hydrocephalus.

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Power of the Hydrocephalus Movement

The Power of a Movement

The Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus … and you are part of our success. As we prepare to make 2014 a year of unprecedented accomplishments, please help us by renewing your membership support.

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Practice Random Acts of Kindness

The Hydrocephalus Association challenges you to practice random acts of kindness leading up to Valentine’s Day! Let’s have some fun!

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CALL TO ACTION: PCORI Seeking Members for Advisory Panels

The Patient-Centered Outcomes Research Institute (PCORI) has announced openings on four Advisory Panels: Clinical Trails, Rare Disease, Assessment of Prevention, Diagnosis, and Treatment Options, and Improving Healthcare Systems.

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2013: A Year in Review

As we wrap up 2013, Dawn Mancuso, CEO, Hydrocephalus Association, reflects back on (and marvels at) all that has happened this past year for the hydrocephalus community.

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The Gift of a Voice

For 30 years, the Hydrocephalus Association has served as the voice for one million patients, raising critical awareness and advocating for greater resources to fund research and better treatment options. We have accomplished so much but yet there is still much to do.

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Current Chicago WALK Chair Featured in Local News

Matthew Schwerha, reporting for the Barrington Courier-Review, interviews one of our current Chicago WALK Chairs, Katie Cook, who’s son Conor has hydrocephalus. The Chicago WALK took place on August 18, 2013 at Soldier’s Field.

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NIH Invitation to Public Meetings on the BRAIN Initiative

The National Institutes of Health (NIH) will hold four meetings open to the public to discuss the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative. The Hydrocephalus Association encourages members of the hydrocephalus community to participate and ensure that our community is represented.

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