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