PPMD's Blog – September 2017 Archive (10)

September 28: FDA Advisory Committee Meeting for Ataluren - Live Webcast Information

On Thursday, September 28, an FDA Advisory Committee will review ataluren for potential approval and use within our Duchenne community.



The Duchenne community is joining forces in a show of strength to…

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Added by PPMD on September 27, 2017 at 6:42pm — No Comments

PPMD Continues Grant Supporting Clinic Liaisons for Certified Duchenne Care Center Program

PPMD is excited to announce that we will continue a grant program to help support our Certified Duchenne Care Center (CDCC) Program. The CDCC Program is a network of…

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Added by PPMD on September 27, 2017 at 12:30pm — No Comments

Are You Ready for Coach To Cure MD This Saturday?

This weekend, nearly every televised College Football game around the country will have coaches wearing Coach To Cure MD armbands, tweeting about Duchenne, and encouraging fans to text a…

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Added by PPMD on September 26, 2017 at 1:00pm — No Comments

Briefing Documents for Ataluren Ad Comm Released

The briefing documents for the September 28…

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Added by PPMD on September 26, 2017 at 9:30am — No Comments

Santhera Receives Negative Opinion from the CHMP for Raxone® and Intends to Appeal this Opinion

Santhera Pharmaceuticals announced that the Committee for Medicinal Products for Human Use (CHMP) of the European Medicines Agency (EMA) has adopted a negative opinion for its Type II extension application for Raxone® (idebenone) in Duchenne. Santhera plans to appeal the opinion and will seek a re-examination by the CHMP. We appreciate…

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Added by PPMD on September 15, 2017 at 8:00am — No Comments

PPMD Designates Nemours/Alfred I duPont Hospital for Children a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Nemours/Alfred I duPont Hospital for Children (Nemours) in Wilmington, Delaware our 17th Certified Duchenne Care Center.

PPMD’s Certified Duchenne Care Center Program, which supports standardized, comprehensive care and services for all people…

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Added by PPMD on September 14, 2017 at 8:30pm — No Comments

Reminder: Deadline to Submit Written Comments for Ataluren Ad Comm is Thursday, September 14

The deadline to submit a written comment for the FDA Advisory Committee Meeting on ataluren is this upcoming Thursday, September 14th.

 

To make a comment,…

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Added by PPMD on September 12, 2017 at 9:30am — No Comments

The 2018 End Duchenne Tour – Coming to a City Near You!

PPMD is excited to announce next year’s lineup of areas we will visit as part of our End Duchenne Tour!



Combining each of the pillars that make up PPMD’s mission, the End Duchenne Tour brings updates on research, advocacy, and care to cities across the country, featuring a roster of leading experts in the Duchenne…

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Added by PPMD on September 8, 2017 at 5:30pm — No Comments

Sarepta Therapeutics Announces Positive Results from 4053-101 Study

Sarepta Therapeutics, Inc. today announced muscle biopsy results from its 4053-101 study, a Phase 1/2 first-in-human study conducted in Europe to assess the safety, tolerability, pharmacokinetics, and efficacy of golodirsen…
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Added by PPMD on September 6, 2017 at 10:00am — No Comments

Roche Provides Community Update on BMS-986089 (RG6206)

Earlier this year, Bristol-Myers Squibb (BMS) announced it had entered into an agreement to license BMS-986089 (RG6206), an anti-myostatin adnectin in development for Duchenne muscular dystrophy, to Roche. Today, the Roche team has provided an update to our…

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Added by PPMD on September 5, 2017 at 9:30am — No Comments

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