MPN Horizons 2019

The 2019 global conference for MPN Patient Advocates was held from October 25th to October 27th in Lisbon, Portugal.

Delegates attended from Armenia, Australia, Austria, Belgium, Brazil, Bulgaria, Canada, Chile, Croatia, Czech Republic, Denmark, Finland, France, Germany, Hungary, India, Ireland, Israel, Italy, Japan, Korea, Macedonia, Morocco, the Netherlands, Norway, the Philippines, Serbia, Slovakia, Slovenia, Sweden, Switzerland, Thailand, the UK, and the USA.

The event consisted of over 20 talks, covering updates on MPN Research, the Psycho-Social Impact of an MPN Diagnosis on patients and caregivers, How to be an Effective MPN Advocate, Pipeline of treatment options for MPNs and a variety of advocacy and support topics.

Videos and slides from the presentations are available here.

Video Gallery

1. Welcome – Jon Mathias and Sofia Sa Cardosa

Day 1: Welcome – Jon Mathias and Sofia Sa Cardosa

2. Patient Diagnosis and The Impact of Diagnosis

Medical Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Patient Diagnosis and The Impact of Diagnosis – Dr. Luzia Travado

3. Progression to Myelofibrosis and Anxiety - Dr. Martin Ellis

Medical Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Progression to Myelofibrosis and Anxiety – Dr. Martin Ellis

4. Progression to Myelofibrosis and Anxiety – Guy Tavori

Medical Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Progression to Myelofibrosis and Anxiety – Guy Tavori

5. Tools to Reduce Anxiety and Increase Quality of Life

Medical Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Tools to Reduce Anxiety and Increase Quality of Life - Dr. Antonio Almeida

6. Caregivers: The Impact of a Diagnosis on the Caregiver

Advocacy Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Caregivers: the impact of a diagnosis on the caregiver – Guy Tavori

7. Roleplay: What patients and caregivers need to know at doctors' visit

Advocacy Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: Roleplay: What patients need to know at doctors' visit and what caregivers need to know at a doctors' visit – Jon Mathias and Cheryl Petruk

8. The role of the clinical nurse in dealing with the psycho-social impact on patients & caregivers

Advocacy Session 1: The Psyco-Social Impact of an MPN Diagnosis Day 1: The role of the clinical nurse in dealing with the psychosocial impact on patient and caregiver – Yvonne Francis, RN

9. Facilitated forum of patient advocacy groups

Advocacy Session 2: How to be an Effective Advocate Day 2: Facilitated forum of patient advocacy groups – Felice Bombaci and Mirjana Babamova

10. How to organize patient organizations from a startup to a mature group – Param Punthen

Advocacy Session 2: The Psyco-Social Impact of an MPN Diagnosis Day 2: How to organize patient organizations from a startup to a mature group – Param Punthen

11. How to organize patient organizations from a startup to a mature group – Lise-Lott Eriksson

Advocacy Session 2: The Psyco-Social Impact of an MPN Diagnosis Day 2: How to organize patient organizations from a startup to a mature group – Lise-Lott Eriksson

12. How to organize patient organizations from a startup to a mature group – Marion Campbell Drew

Advocacy Session 2: The Psyco-Social Impact of an MPN Diagnosis Day 2: How to organize patient organizations from a startup to a mature group – Marion Campbell Drew

13. Molecular structure alphabet soup: mutations other than JAK/CALR/MPL

Medical Session 2: MPN 301 – More Details on MPN Blood Cancers Day 2: Molecular structure alphabet soup: mutations other than JAK/CALR/MPL – Dr. Martin Ellis

14. Implications of mutation identification on treatment decisions

Medical Session 2: MPN 301 – More Details on MPN Blood Cancers Day 2: Implications of mutation identification on treatment decisions – Dr. Steffen Koschmieder

15. Guidelines update: National Comprehensive Cancer Network (NCCN)

Medical Session 2: MPN 301 – More Details on MPN Blood Cancers Day 2: Guidelines update: National Comprehensive Cancer Network (NCCN) - Professor Claire Harrison

16. Pipeline of treatment options for MPN

Medical Session 3: Patient-Reported Outcomes and Patient Engagement in Clinical Trials Day 2: Pipeline of treatment options for MPNs - Professor Claire Harrison

17. Clinical Trials: The Trials Process

Medical Session 3: Patient-Reported Outcomes and Patient Engagement in Clinical Trials Day 2: Clinical Trials: the trials process – Dr. Martin Ellis, Pharma Representative Dr. Steffen Koschmieder and clinical nurse Yvonne Francis, RN

18. Quality of life and patient-reported outcomes - the role of patient advocacy

Medical Session 3: Patient-Reported Outcomes and Patient Engagement in Clinical Trials Day 2: Quality of life and patient-reported outcomes - the role of patient advocacy - Jon Mathias

19. Quality of Life Survey - Preliminary Results

Advocacy Session 3: MPN an Update Day 2: Quality of Life Survey - Preliminary Results – Cheryl Petruk and Jon Mathias

20. Landmark 2.0 information and Improving contact between MPN AN and PAGs: Delegates Q&A

Advocacy Session 3: MPN an Update Day 2: Landmark 2.0 information – Cheryl Petruk and Transitioning your organization and improving contact between MPN AN and PAGs: Delegates Q&A – Peter Loffelhardt

21. The role of the clinical nurse: Treatment management

Medical Session 4: Living with an MPN Day 3: The role of the clinical nurse: Treatment management – Yvonne Francis, RN

22. Treating MPN patients who refuse conventional therapy - tales from the clinic

Medical Session 4: Living with an MPN Day 3: Treating MPN patients who refuse conventional therapy-tales from the clinic. Illustration of a holistic approach to treatment – Dr. Martin Ellis

23. Best Practices: Buddy System, United Kingdom

Advocacy Session 4: Best Practices Day 3: Buddy System, United Kingdom – Marion "Mas" Campbell-Drew

24. Best Practices: Global MPN Awareness Day

Advocacy Session 4: Best Practices Day 3: Global MPN Awareness Day – Peter Loffelhardt

25. Best Practices: Patient Magazine

Advocacy Session 4: Best Practices Day 3: Patient Magazine, Korea – Bora Yun

26. MPN Horizons 2019 Closing Remarks

Day 3: Closing Remarks - Jon Mathias and Peter Loffelhardt