Public Meeting on Fibromyalgia - FDA Patient-Focused Drug Development - Dec 10, 2013

[Mark]

Received via CFSAC ListServe...

Dear Patient Stakeholder,
We invite you to attend an upcoming public meeting on fibromyalgia, as part of FDA’s Patient-Focused Drug Development initiative. The goal of the meeting is to hear patient perspectives on symptoms of fibromyalgia that matter most to patients and on current approaches to treating fibromyalgia.
Date: December 10, 2013
Time: 1:00 pm – 5:00 pm
Location: FDA White Oak campus at 10903 New Hampshire Avenue, Silver Spring, MD

Visit the FDA website for more information and to register for the meeting: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm363203.htm.

We’ve also developed a series of webinars to provide background on FDA and Patient-Focused Drug Development. Watching these webinars in advance may be helpful in preparing for the meeting.

The patient voice is integral to FDA’s Patient-Focused Drug Development initiative. We encourage you to reach out to your peers, patients, and other patient stakeholders to spread the word by forwarding on this email and sharing through social media.

We look forward to this exciting meeting and hope to see you there. If you have any questions, please feel free to contact Andrea Furia-Helms at Andrea.Furia@fda.hhs.gov or Graham Thompson at Graham.Thompson@fda.hhs.gov.

 

[Wally]

Received via CFSAC ListServe...

Dear Patient Stakeholder,
We invite you to attend an upcoming public meeting on fibromyalgia, as part of FDA’s Patient-Focused Drug Development initiative. The goal of the meeting is to hear patient perspectives on symptoms of fibromyalgia that matter most to patients and on current approaches to treating fibromyalgia.
Date: December 10, 2013
Time: 1:00 pm – 5:00 pm
Location: FDA White Oak campus at 10903 New Hampshire Avenue, Silver Spring, MD

Visit the FDA website for more information and to register for the meeting: http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm363203.htm.

We’ve also developed a series of webinars to provide background on FDA and Patient-Focused Drug Development. Watching these webinars in advance may be helpful in preparing for the meeting.

The patient voice is integral to FDA’s Patient-Focused Drug Development initiative. We encourage you to reach out to your peers, patients, and other patient stakeholders to spread the word by forwarding on this email and sharing through social media.

We look forward to this exciting meeting and hope to see you there. If you have any questions, please feel free to contact Andrea Furia-Helms at Andrea.Furia@fda.hhs.gov or Graham Thompson at Graham.Thompson@fda.hhs.gov.

is there a reason that this meeting is happening at the same time as the HHS CFSAC meeting? Don't ME/CFS patients make up a large population of patients who have also been diagnosed with Fibromyalgia? So, if I understand the scheduling of these two meetings correctly, I must choose between going to the Fibromyalgia meeting or getting a golden ticket to attend the CFSAC meeting with limited participation by the first 500 people who pre-register for their closed meeting format.

I am somewhat speechless at this moment. But come Tuesday I plan to give the FDA and the Office of Women's Health a resounding fail in organizing and coordinated these meetings, which also reflects on Asst. Secretary Koch, Secretary Sebelius and ultimately President Obama.

Mr. President you appear to have a mountain of problems over at the HHS that need your attention a.s.a.p. and I am not referring to the disastrous rollout of the Affordable Care Act.

 

[*GG*]

is there a reason that this meeting is happening at the same time as the HHS CFSAC meeting? Don't ME/CFS patients make up a large population of patients who have also been diagnosed with Fibromyalgia? So, if I understand the scheduling of these two meetings correctly, I must choose between going to the Fibromyalgia meeting or getting a golden ticket to attend the CFSAC meeting with limited participation by the first 500 people who pre-register for their closed meeting format.

I am somewhat speechless at this moment. But come Tuesday I plan to give the FDA and the Office of Women's Health a resounding fail in organizing and coordinated these meetings, which also reflects on Asst. Secretary Koch, Secretary Sebelius and ultimately President Obama.

Mr. President you appear to have a mountain of problems over at the HHS that need your attention a.s.a.p. and I am not referring to the disastrous rollout of the Affordable Care Act.

Do yourself a favor and don't count on the gov't for anything, the private sector will advance our cause much more, this tree is not worth barking up. A generation has gone by with barely anything of value coming from the gov't, if anything, they only muddy the waters and keep us "down" and still ill!

GG