Navigation Links
Parent Project Muscular Dystrophy Endorses Senate Version of Prescription Drug User Fee Act After Patient Voice Strengthened
Date:5/24/2012

HACKENSACK, N.J., May 24, 2012 /PRNewswire-USNewswire/ -- As the U.S. Senate continues debate on legislation that seeks to accelerate delivery of safe and effective therapies to patients and to increase the patient voice as part of the therapy review process, Parent Project Muscular Dystrophy (PPMD) is pleased to offer its enthusiastic endorsement of the legislation.

(Logo: http://photos.prnewswire.com/prnh/20100119/DC39975LOGO)

Over the past several months, PPMD – the leading advocacy organization fighting to end Duchenne muscular dystrophy (Duchenne) – has fought to include several key provisions included in the Senate version of the Food and Drug Administration Safety and Innovation Act, commonly referred to as the Prescription Drug User Fee Act or PDUFA. A number of similar provisions are also included in a House bill expected to be voted on by that chamber next week.

"The provisions included in the Senate user fee bill will help expand the patient voice when key decisions are being made, an issue of grave importance to our community and to the larger rare disease community," PPMD President Pat Furlong said.  "The provisions will also provide the FDA with additional tools to more quickly review potential therapies for life-threatening conditions, including Duchenne."

The organization has also supported expanded external expert engagement on key issues such as benefit/risk and trial design, and has urged the FDA to accelerate the timing of various rare disease-focused activities.

"As Congress works to finalize the user fee legislation, PPMD calls upon the U.S. House of Representatives to amend their version of the user fee bill to mirror the patient representative provisions contained in the Senate legislation," Furlong said.

The legislative provisions that strengthen the patient voice throughout the FDA review process parallel the FDA Policy position statement adopted by the PPMD Board of Directors in February, and align with the Congressional request made by the PPMD community during the 2012 Advocacy Conference in Washington, DC.

About Parent Project Muscular Dystrophy

Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy.  Our mission is to end Duchenne. We accelerate research, raise our voices in Washington, demand optimal care for all young men, and educate the global community. PPMD is headquartered in Middletown, Ohio with offices in Hackensack, New Jersey.  For more information, visit www.ParentProjectMD.org.


'/>"/>
SOURCE Parent Project Muscular Dystrophy
Copyright©2010 PR Newswire.
All rights reserved

Related medicine technology :

1. A Sociolinguistic Analysis of In-Office Dialogue Reveals Psychiatrists and Parents Have Significantly Different Perceptions on ADHD and Psychiatric Comorbidities
2. An Open Letter to Parents, Students, School Administrators, & Health Care Officials from Soapopular(R)
3. Survey Shows Parents Best Intentions Out of Step with Expert Recommendations in Protecting Kids from Flu
4. Parents Make Donations to National Autism Association for Cutting-Edge Research
5. Unprecedented 8th Year Start Up of National Direct AmeriCorps Program Access to Care Through Service (ACTS) Parent, Lead Organization The Philadelphia AIDS Consortium and World Health Care Infrastructures
6. Photos: NIH Launches New Web Site for Parents on Medical Research Studies for Children
7. The COSHAR Foundation Urges Parents to Ensure Children Are Up-to-Date on Vaccinations
8. Transparent Inc. to Introduce Cell-able, a Unique Human Hepatocyte Array, to U.S. Market at ISSX Meeting
9. National Foundation for Infectious Diseases (NFID) Survey: Parents More Flu Aware and More Likely to Get Kids Vaccinated
10. IQAir HealthPro Plus Selected as a Top 10 Product for Parents
11. deCODE Discovers a Major Risk Factor for Type 2 Diabetes Dependent on Parent of Origin
Post Your Comments:
*Name:
*Comment:
*Email:
(Date:5/26/2016)... 2016 TARE (Transarterial Radio-embolization) ... Savings and Overall Decreased Use of Hospital ... international specialist healthcare company, has today announced the ... Meeting of ISPOR (International Society for Pharmacoeconomics and ... (HCC) using yttrium-90 glass microspheres is associated with ...
(Date:5/25/2016)... FDA 510(k) clearance covers ... for urological and surgical applications Mauna ... Cellvizio®, the multidisciplinary confocal laser endomicroscopy (CLE) platform, ... US with the 12 th 510(k) clearance ... This new FDA clearance covers Confocal Miniprobes indicated ...
(Date:5/25/2016)... , Germany and GERMANTOWN, ... QIAGEN N.V. (NASDAQ: QGEN ; Frankfurt Prime Standard: ... licensing and co-development agreement with Therawis Diagnostics GmbH to develop ... be to develop and market PITX2 as a marker to ... high-risk breast cancer patients. "We are pleased to ...
Breaking Medicine Technology:
(Date:5/27/2016)... ... 27, 2016 , ... An educational campaign aimed at everyone ... courtesy of awareness-driven celebrities and thought leaders. It also provides insight to the ... leaders such as Bioness. , As patients feel increasingly concerned about the ...
(Date:5/27/2016)... (PRWEB) , ... May 27, 2016 , ... Aimed at ... human interest stories, which come courtesy of leaders in the nursing and health care ... from leading advocates and associations—namely Abilene Christian University. , As the nursing industry ...
(Date:5/26/2016)... ... May 26, 2016 , ... There are many ways to cook a ... (NHDSC) suggests that Americans prefer their dogs straight off the grill. Of the 90 ... their favorite way to cook a hot dog, far outpacing other cooking methods such ...
(Date:5/26/2016)... Atlanta, Georgia (PRWEB) , ... May 26, 2016 ... ... a certificate in intellectual property (IP) to its specialty academic programs. , Answering ... joins the college’s existing certificate programs in health law, and environmental and land ...
(Date:5/26/2016)... ... May 26, 2016 , ... ... a significant negative impact on long-term patient survival, reports a team of UPMC ... online this week in the Journal of Thoracic and Cardiovascular Surgery, provide critical ...
Breaking Medicine News(10 mins):