“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to… Continue reading “We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended… Continue reading Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

Improving drug safety through the patient voice

At PatientsLikeMe we’re interested in bringing the voice of our patients to the attention of those who make drug products and to the regulators that approve them. Since 2008 we have conducted a series of projects to collect safety information from some of our member communities. We’ve worked with our pharmaceutical partners to help them… Continue reading Improving drug safety through the patient voice

Patient-focused organizations join forces to build awareness and participation

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives. Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are… Continue reading Patient-focused organizations join forces to build awareness and participation

Share and Compare: The Launch of Two Medications

The launch of a new medication can be a very exciting event.  It can renew hope for a better future and provide proof of the billions spent on research every year.  It can also stimulate a lot of interesting conversation. Or not.  We’ve learned from you that not every new medication warrants your attention and… Continue reading Share and Compare: The Launch of Two Medications

Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year. Successes 1.  New Partnerships, New Communities In the first… Continue reading Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

Share and Compare: Be a PRO! Understand Your Experiences in Context

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you. Patient… Continue reading Share and Compare: Be a PRO! Understand Your Experiences in Context

A Year in Review: PatientsLikeMe in 2009

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year! Community MilestonesThis year, the 15+ disease communities… Continue reading A Year in Review: PatientsLikeMe in 2009

Sharing, Openness…and Privacy?

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business. This often results in our Privacy Policy and User Agreement being updated to help clarify our goals… Continue reading Sharing, Openness…and Privacy?

An Interview with UCB’s Peter Verdru

Last month, PatientsLikeMe announced our partnership with biopharma leader, UCB, to launch a new community for people with epilepsy.  Below is an interview with UCB’s Vice President of Clinical Research, Peter Verdru, MD.  David S. Williams III, head of PatientsLikeMe business development, recently spoke with Peter about the forthcoming epilepsy community, adverse event reporting, and… Continue reading An Interview with UCB’s Peter Verdru