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Leukemia Patient Advocates Foundation

Patient Advocacy Organization
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  • Info
  • People 1
  • Initiatives 6
  • Events 0
  • Resources 2

About the organization

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The Leukemia Patient Advocates Foundation is a patient-led non-profit foundation in Switzerland. Its mission is to improve the lives & survival of patients affected by Leukemia. It is a platform for discussions & best practice sharing to Leukemia patient groups worldwide. The foundation collaborates with all stakeholders involved in research, policy, treatment, and care. It also acts as a platform for patient organisations – concentrating on educating, connecting, and supporting patient group leaders. The foundation acts as a legal platform for self-sustained patient advocacy networks: The CML Advocates Network (116 patient organisations in 86 countries), the MPN Advocates Network, the CLL Advocates Network and the Acute Leukemia Advocates Network (ALAN).

Mission : Our mission is:

➤To improve the lives and survival rates of patients affected by leukemia, as well as their relatives, worldwide
➤To support patient leaders in providing help and support to leukemia patients and their relatives
➤To provide a platform for education and best practice sharing of leukemia patient groups worldwide
➤To collaborate with other stakeholders involved in research, treatment, and care of leukemia patients

Vision : Our vision is a world in which all leukemia patients have access to the best treatment, care and support available.

Organization primary focus : Patient advocacy for the benefit of leukemia patients

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Website

http://www.lepaf.org

Address

Bern, Switzerland

Contact us for

General partnerships, Good practice sharing, Opportunities for patient engagement collaborations

Organization main contact email

info@lepaf.org

Conditions

Oncology/Other

People (1)

Jan Geissler

Co-Founder

Munich,

PFMD / Patvocates / Leukemia Patient Advocates Foundation / EUPATI / CML Advocates Network - For Chronic Myeloid Leukemia Patient Group Advocates

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Initiatives (6)

  PFMD - Patient Focused Medicines Development

The Synergist, PFMD, National Health Council ,
+ 23

Global

Currently underway

  PE Stakeholder Expectation Matrix

PFMD, EURORDIS - Rare Diseases Europe, Merck Sharp & Dohme (MSD) ,
+ 4

Global

  Pledge to Patients

PFMD, The Synergist, National Health Council ,
+ 17

Global

Currently underway

  Synapse Patient Engagement Global Landscape, Expert Network and Repository

PFMD, Merck Sharp & Dohme (MSD), EURORDIS - Rare Diseases Europe ,
+ 25

Global

Currently underway

  Co-creation of the Patient Engagement "Meta-Framework"

PFMD, NIHR INVOLVE, Drug Information Association (DIA) ,
+ 24

Global

Completed over one year ago

  The Patient Engagement Quality Guidance (PEQG)

PFMD, The Synergist, National Health Council ,
+ 9

Global

Currently underway

Resources (2)

CML Patients’ Views on Psychological Support throughout the Treatment-Free Remission Journey

09 Dec 2019 Publication

Patient feedback on a paediatric CML study

16 Jul 2020 Article and blog post

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