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April 10, 2015

TOPIC: Featured News

Lauren Hill Dies at 19 after Battle with Brain Cancer, DIPG

Posted by Christina Jensen

This article was originally published by USA TODAY Sports

Lauren Hill touched a nation with her desire to play for Mount St. Joseph’s women’s basketball team, even as she battled an inoperable brain tumor.

Her resolve, spirit and courage were celebrated Nov. 2 when she realized her dream at Xavier University’s Cintas Center. Cheered on by a sold-out crowd of… Read More

March 27, 2015

TOPIC: Uncategorized

Can Crowdfunding Help Cure a Rare Disease? Cure Black Bone Disease: Time Is Running Out.

Posted by Christina Jensen

Crowdfunding is a way of raising money to fund a specific project or fullfil a specific goal in a relatively short amount of time. It involves asking a large number of people for a small contribution to the project. The method is not just about getting money- it is about developing support from a crowd of people who believe… Read More

March 20, 2015

TOPIC: Uncategorized

Rare Disease Day 2015 was the biggest and most impactful yet!

Posted by Christina Jensen

The final 2015 State House Event took place yesterday.  Now that all of the numbers are in, take a look at (and share!) this year’s highlight reel & recap:Together, we planned and hosted 32 State House Events in capitol buildings across the U.S., up from last year’s 12 State House Events

  • Governors in 36 states issued proclamations for “Rare Disease Day”
  • The Senate passed a resolution declaring… Read More

March 17, 2015

TOPIC: Uncategorized

FDA Commissioner on Medical Product Innovation

Posted by Christina Jensen

FDA Advances Medical Product Innovation
By: Margaret A. Hamburg, M.D.

As posted on March 17, 2015 by FDA Voice

On March 10, I had the pleasure of appearing with my colleague Dr. Francis Collins before the Senate Committee on Health, Education, Labor and Pensions to testify at a hearing on the subject of “Continuing America’s Leadership in Medical Innovation for Patients.”… Read More

March 16, 2015

TOPIC: Uncategorized

NORD’s Paul Melmeyer Authors Piece in NCC Collaborator about State-Based Advocacy

Posted by Christina Jensen

NORD’s Assistant Director of Public Policy, Paul Melmeyer, authored this great piece (below) in the March 2015 issue of the NCC Collaborator, the monthly publication from the National Coordinating Center for the Genetic Service Collaboratives (NCC).  NCC focuses on bringing quality genetic and newborn screening services to local communities, and building bridges between public health, primary care/ Medical Home,… Read More