In A Parents Words – Why RARE Disease Needs ULTRA!
Roy and Reed Zeighami, couldn’t have articulated it better – why the RARE Disease Community needs the ULTRA Act of 2012. Please join Roy in viewing his two minute video! And. . . if you feel so compelled, take action!!! ULTRA Act of 2012 – need your support Over 90 organizations have signed on to [...]
Clinical Trials for Rare Disease Patients – Legislation needs your support!
We wanted you to be aware of pending Federal legislation that may be significant for you and for our rare disease community. In June, legislation that enables individuals with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits was sponsored by Senators Ron Wyden (D-OR), Christopher Dodd (D-CT), Richard Durbin [...]