Orphan Drug Act Resolution Introduced in Congress

As a Member Organization of the National Organization for Rare Disorders (NORD), MEBO is in a position to unite with attorneys and legislators to support the passing of resolutions, such as the Orphan Drug Act Resolution mentioned in the NORD policy alert below.

H.Res.1154 was introduced in Congress by Senator Hatch and Representatives Lance and Butterfield, affirming the importance of the Orphan Drug Act, applauding its lifesaving contributions over its 35-year history, and recognizing the need to continue supporting research and development for rare diseases. For more information on the Resolution, here. Additionally, for more general information on the ODA, check out NORD's new one-pager here

The Orphan Drug Act has the potential of increasing the possibility of researchers for our community to obtain research grants to develop or designate existing therapeutics for conditions suffered by members of the MEBO Community around the world. Therefore, all sufferers in the United States are asked to write to their Senators and Representatives asking them to "demonstrate your support for the ODA by cosponsoring H.Res 1154 and S.Res 690" which,

(1) applauds the tremendous growth in research and development into new therapies for rare diseases and the resulting number of FDA-approved therapies for people living with rare diseases;
(2) recognizes that significant research and development efforts and related investments are needed to develop therapies to treat and cure the thousands of rare diseases for which no treatment options are currently available; and
(3) affirms the need to continue supporting public and encouraging private investment in research and development of new treatments for rare diseases.

María
María de la Torre
Founder and Executive Director

A Public Charity
maria.delatorre@meboresearch.com
www.meboresearch.org
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