Patient Stories

Woman With Myelofibrosis Gets Unapproved Drug With Help of Care Team

How can you advocate for yourself with a clinical trial drug if it’s later taken away? Watch as Sandra Dillon shares her story of her fedratinib trial.

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MPN Therapy: Advice and Guidance for Making Treatment Decisions

How is treatment chosen and monitored for MPNs? Tune in to hear expert and patient views on treatment decisions, assessing treatment response and more.

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Making a Difference: Leaders in Advocacy From the MPN Alliance Australia Share Their Story

Joining Patient Power from Melbourne, Australia, MPN patients Nathalie Cook and Ken Young share their stories of advocating for approval of medications and forming the MPN Alliance Australia.

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How Do You Know When It’s Time to Switch MPN Therapies?

What physical symptoms indicate a necessary change in the course of MPN therapy? What factors do medical experts consider before making a switch? Watch now to find out.

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How Getting to the Right MPN Specialist Turned One Man’s Life (and Prognosis) Around

A 71-year-old MPN patient Nelson Patz was initially treated for Lyme disease and experienced painful, severe side effects but today he feels stronger than ever. How did he get to the care he needed? Watch now as he walks us through the twists and turns of his treatment journey.

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Progression in MPNs: Allaying Fears and Taking Action

In part two of our Partners series, leading expert Dr. Mark Heaney and MPN patients Ann and Jonna discuss risk stratification, progression, potential complications and actionable steps to take to access the best care available.

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Advice From Cancer Survivor Sajjad Iqbal on Becoming an Empowered Patient

We spoke with Dr. Sajjad Iqbal on his experience with head and neck cancer. Watch as he describes his personal perseverance and commitment to being an empowered patient.

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Patient-to-Patient Advice: Staying Informed With an MPN

How can you take a more active role in your health care? MPN Patient advocates, Samantha Trahan and Andrea Spica, share tips for becoming an empowered patient on your treatment journey.

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You’ve Been Diagnosed With an MPN: Now What?

This Partners program features Dr. Laura Michaelis, MPN patients and Andrew Schorr sharing unique perspective related to diagnosis, disease monitoring, treatment decisions, and what life is like with an MPN.

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Page last updated on November 7, 2013