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Centric Health Resources Ultra-Orphan Conference

September 30, 2010
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Posted by Georgia Relich

For the third year in a row, I’ve had the opportunity to attend Centric Health Resource’s annual conference.  This year the conference focused on “Emerging Commercialization Strategies for Addressing the Needs of Ultra-Orphan Patients–Maximize Product Launch and Extend Product Life Cycle One Patient at a Time.” Centric brings together some high-profile presenters who address the issues that matter most to those challenged by rare diseases and those who are offering solutions.  In a whirlwind two days that took us from the 30,000 foot to runway perspective, we had the chance to hear about everything from the impact of healthcare reform on the ultra-orphan market to REMS to pricing and reimbursement to patient advocacy and everything in between.  This year Centric introduced a patient panel, consisting of four patients who live with a rare chronic disease.  For me, that was the highlight of the conference.

So, what were my big takeaways?  This was tough, but . . .

1.  Healthcare reform is good for patients.

2. The FDA is in the data management business. This goes along with # 3.

3. REMS is good.  #2 and #3 go hand-in-hand.  REMs is ultimately designed to create more data by which manufacturers, distributors and patients can learn and monitor drug usage.

4. Patients want regular communications, period.  That means on clinical trials, outcomes, information, education, financial support, anything that affects their condition.

Kudos to the Centric team.  Another success.  I’m already looking forward to next year.

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