Welcome to the Hydrocephalus Association website and to our hydrocephalus community. We hope that the information and support you find here will be of help.
From The Blog
Are You An Assertive Member of Your Health Care Team?
We asked on our Hydrocephalus Association Facebook Page:
“Many of us work with a team of health care providers. What are your top three tips on how you communicate with them to be an assertive and effective member of the team? ”
We had received some really valuable input and feedback. Here is what some of you shared with us: (more…)
Happening NOW: HA Attends the Rare Disease Day Conference at NIH
CEO Dawn Mancuso & Research Programs Manager Ashly Westrick are attending the Rare Diseases Day Conference at the National Institutes of Health (NIH) in Bethesda, MD, today and tomorrow. This conference is providing a unique opportunity to hear updates and engage in conversations with leaders at NIH, DHHS, FDA, DOD, the Social Security Administration, and other patient advocacy groups to find innovative ways to solve the challenges with chronic and rare diseases face every day. The conference coincides with Rare Disease Day, today, Thursday, February 28, 2013 – a day where we recognize individuals living with rare diseases and conditions in the United States and around the world.
Looking Back…Moving Forward: You’re Not In This Alone
As we look back and commemorate 30 years of supporting, educating, connecting and informing families, we ask where we would be without our volunteers. Our volunteer leaders across the country have helped weave the rich tapestry of our HA history. This week Jennifer Bechard, our Support Group Liaison, sits down with our Virginia Support Group Leader, Annie Mason. (more…)
2013 Every Member Campaign
The Hydrocephalus Association is pleased to announce the launch of the 2013 Every Member Campaign. Last year’s campaign was a great success, enabling HA to make significant strides with our advocacy and support work. We would like to thank all of our loyal donors who join us each year to move HA’s agenda to end hydrocephalus forward.
We hope you will continue to stand by our side as we prepare to make 2013 a year of unprecedented growth in the fight against this condition.
Please take a moment right now to renew your commitment by clicking here and make your annual membership contribution to the Hydrocephalus Association. (more…)
