Hydrocephalus Advocates Join Rare Disease Week

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Rare Disease Week 2017 took place on February 27 through March 2 in the Nation’s capital. Hundreds of patients, caretakers, and rare disease organizations gathered on Capitol Hill to advocate on behalf of the rare disease community. HA staff were joined by members of our Hydrocephalus Action Network (HAN) to represent our hydrocephalus community in the week of activities.

The week kicked off at the National Institutes of Health (NIH) where each year the National Center for Advancing Translational Science (NCATS) and the NIH Clinical Center sponsor Rare Disease Day. This year’s theme was Research, using the slogan, “Research brings hope to people living with a rare disease.” Key experts in their field delivered presentations on rare diseases, ranging from Aids to Zika. Dr. Francis Collins, Director of NIH, and Congressman Leonard Lance, Republican House Chair of the Rare Disease Caucus, delivered honorary guest presentations. Later that evening, a cocktail reception and film screening took place at the U.S. Naval Heritage Center hosted by the Rare Disease Legislative Advocates (RDLA).

The next two days were dedicated to understanding current policy issues that impact the rare disease community and then taking our message up to Capitol Hill. On Tuesday, February 28, advocates attended a Legislative Conference hosted by RDLA in partnership with the EveryLife Foundation for Rare Diseases that prepared all the participants for their Hill visits with legislative updates and team introductions. After the conference, HA advocates met to discuss the legislative issues that directly impact the hydrocephalus community. We wanted to urge our representatives to make sure that hydrocephalus, along with other neurological conditions, are included under the 21st Century Cures’ National Neurological Conditions Surveillance Systems. By including hydrocephalus in this data registry it will help physicians, scientists and patients fill in the gaps of missing information, including how many people are affected in the U.S.

On Wednesday, March 1, rare disease advocates networked at breakfast before setting out on Capitol Hill to voice their concerns and share their personal stories. Wednesday’s Lobby Day was an opportunity for congressional and senatorial leaders and their staff to meet the individuals directly impacted by the enacted legislation on healthcare reform. Rare disease advocates urged members to increase NIH funding by $2 billion for more medical research, to sign-on and support the OPEN Act, and to join the bipartisan and bicameral Rare Disease Caucus. The Capitol Hill visits were followed by the Rare Artist reception hosted by the EveryLife Foundation in the Kennedy Caucus Room in the Senate Office building. The reception highlighted some gifted/talented artists who excelled and shined despite the challenges living with their respective condition places on them.

On Thursday, March 2, the week’s events came to a close with a Rare Disease Congressional Caucus briefing. The briefing included an expert panel made up of senior staff of health organizations and lobbying firms. The panelists gave their perspective on what the rare disease community should expect and prepare for in Fiscal Year 2017 with the pending healthcare reform.

As in years past, the Hydrocephalus Association remains committed to supporting our allies in the rare disease space and we look forward to tackling this year’s challenges and opportunities in our fight to find a cure. We want to thank the advocates who joined us in Washington, D.C. for Rare Disease Week.

If you want to become an advocate for the hydrocephalus community, join our Hydrocephalus Action Network! CLICK HERE



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