A journey to the heart of the EMA – Patient-Voice – From Cancer World

A look into the growing role of patient advocates in the European Medicines Agency (Europe’s version of the FDA).

Flexibility and goodwill have allowed patient involvement in the work of Europe’s drug regulators to develop at an impressive pace. But will they be enough to withstand the strains on the relationship

Source: A journey to the heart of the EMA – Patient-Voice – January-February-2016 Issue 70 – Cancer World – Shaping the future of cancer care

My Cup Runneth Over: A Belated AACR Update

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Filled with blessings and making a virtual mess on my kitchen counter, my cup runneth over these days, so I am LONG overdue in sharing my incredible experience at the AACR (American Association for Cancer Research) Annual Meeting as a participant in the Scientist <->Survivor Program.  

AACR: AN UPDATE

If you’ve been to AACR you will totally get this. If you’ve been to SABCS, you’ll come close to getting this. If you’ve never attended a medical conference as an advocate, you may not get this, but rest assured most of us conference junkies really don’t either.

The seemingly simple task of creating a conference schedule is a Herculean effort. The full AACR Program guide is – I kid you not – 724 pages. Sure, there’s an app for that, but mastering the categories in which the app sorts sessions is beyond my chemo-addled mind. All this to say, my primary goal was to collect as much information as I could about the latest advances in MBC and I’m sure there were sessions I never even found. In addition, my AACR’s Scientist <-> Survivor Program team was tasked with the responsibility with preparing a presentation on clinical trials. Plus Jody Schoger (of #BCSM fame) and I presented a poster on Breast Cancer Advocacy. The challenge: too few hours in a day! I had greater success on the clinical trials front than I did with MBC breaking news, but below you will find a hodgepodge of updates I hope you find helpful.

The most significant headline for MBC patients: More

Breast Cancer Advocates: Five Minutes of Your Time, Please…

5minutesI am thrilled and honored to be attending the upcoming AACR Scientist <-> Survivor Program in April! One of the requirements for us as advocates is to present a poster. Mine focusing on giving researchers greater insight into who advocates are and what they do. To do that, I need your help.

The survey linked below is 9 questions long and will take no more than 5 minutes. I am not collecting any personal data and your responses will be combined with those of others; you will not be identified in any way.

Please TAKE THE SURVEY to help me explain who we are, what we do, and why we do it!

Thank you VERY much in advance!!

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