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February 2017 Blog Posts (10)


Staff
PPMD Joins Rare Disease Advocates in Letter to President

PPMD joined 200 patient organizations in a letter to President…

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Added by Annie Kennedy on February 27, 2017 at 7:30pm — No Comments

Recap: PPMD's Adult Advisory Committee (PAAC) Leadership Meeting and 2017 Advocacy Conference

Heartening. That’s how I found last week’s PPMD PAAC Leadership and Advocacy Conference.  Every time the whole community gets together, I leave feeling EMPOWERED.  I like that word. Good word isn’t it? There is no limit to what I can do for my community. And I imagine I’m not the…

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Added by Buddy Cassidy on February 27, 2017 at 4:00pm — No Comments


Staff
Duchenne Research Update: February 2017

 

An Overview of Your Impact in Action



PPMD Grant Awards in the last Quarter of 2016 and first part of 2017.

 

PPMD Launches Long-Term…

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Added by Abby Bronson on February 24, 2017 at 1:29pm — No Comments


Staff
PPMD Designates Ann & Robert H. Lurie Children's Hospital of Chicago a Certified Duchenne Care Center

Today Parent Project Muscular Dystrophy (PPMD) named Ann & Robert H. Lurie Children’s…

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Added by PPMD on February 16, 2017 at 12:00pm — No Comments


Staff
PPMD’s #EverySingleOne Tour: Los Angeles, CA

Children’s Hospital Los Angeles (CHLA) marked our first stop of the New Year on PPMD’s 2017 Every Single One Tour, held on January 21, 2017. We were thrilled to not only be holding another tour stop at one of …

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Added by PPMD on February 15, 2017 at 10:30am — No Comments


Staff
Marathon Pharmaceuticals Pauses Commercialization of EMFLAZA™ (deflazacort)



UPDATE: February 13, 2017, 5:10 PM -- An additional statement from Marathon has been added to the blog



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Today, Marathon…

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Added by PPMD on February 13, 2017 at 4:00pm — No Comments


Staff
Deflazacort Approved in the U.S. for Duchenne

UPDATE 2/10: Marathon has released links to new resources, including the EMFLAZA website (https://emflaza.com) and a Patient Support FAQ document (…

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Added by Pat Furlong on February 9, 2017 at 5:00pm — 2 Comments


Staff
PPMD to Host Forum on Access to Emerging Therapies on February 13th, 2017

Following decades of strategic advocacy, research investment, and biopharmaceutical development, the U.S. Duchenne community recently arrived in the post-approval space and is poised to receive additional novel therapies from a robust innovation pipeline.…

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Added by PPMD on February 7, 2017 at 1:57pm — No Comments


Staff
PPMD’s Duchenne Drug Development Roundtable: Bringing Industry Together to Accelerate Research

Better. Faster. Now.

 

How do we apply the ‘regulatory learnings’ of the past 18 months back into our robust Duchenne pipeline to ensure as many effective therapies yield from our pipeline as possible?

Under the leadership of PPMD's Duchenne Drug Development Roundtable (DDDR), our community is determined to figure that out. Today is the first of a…

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Added by Abby Bronson on February 1, 2017 at 10:00am — No Comments

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