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Lance Honors Rare Disease Advocates at the House Chamber

John Byers

Friday, February 28, 2014 • 8:56am

TRENTON, NJ - "There is a lot to do - but we'll do it together," said Congressman Lance who recognized the advocates to the Chamber during Rare Disease Week. 

Lance's remarks as delivered:

This week we recognize the work of the tireless advocates for rare diseases.  I have the honor of serving as the Republican Chair of the Congressional Rare Disease Caucus.  I consider it a very important responsibility as part of my service here and an honor to work for innovative treatments, new technologies and to build an atmosphere of appreciation and understanding on Capitol Hill for the hard work of all the patient advocates.  Their passion is often driven by the care of loved ones and their personal stories are profiles in courage.

Hearing from countless advocates –many of whom are here in Washington this week – gives the members of the caucus renewed energy and purpose.  Events held during Rare Disease Week highlight what has been accomplished and what still needs to be done, and there is a lot to do – but we’ll do it together.

I am working on important legislation in this area.  The bipartisan "Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (or MODDERN) Cures Act" which will would update the Nation’s drug evaluation process to encourage the discovery and development of new treatments for chronic and rare diseases.  The measure will also create a system that rewards efficiency and effectiveness to the benefit of all persons with rare diseases.

The MODDERN Cures Act will encourage the development of drugs abandoned in the development process. It will create a new category of drugs known as dormant therapies for compounds with insufficient patent protection.  Drugs that offer the promise to treat conditions with unmet medical needs.

Updating regulatory networks such as patent reform will help open the pipeline for new innovations and therapies.  Patients with degenerative conditions, cancers and rare diseases await the genius of these new solutions.

While we do not know the cause or cure of many of these rare diseases or cancers, we do know that awareness is the best protection, information is the best tool for innovation and well-rounded care during and after treatment is the best therapy.

That is our mission in the caucus.  To work together to find solutions that make a lasting difference.  I again thank the families and advocates whose challenges we may never completely understand but whose commitment to their loved ones is unyielding and inspiring.  The caucus pursues its mission in their name.

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Video Credit C-SPAN

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