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Bringing patient's perspectives to the forefront of the iCMLf

The iCMLf has recently established a Patient Advisory Committee as a vital component of its governance and structure.

Mission statement:

The iCMLf Patient Advisory Committee is dedicated to bringing the perspectives, needs, and priorities of CML patients to the forefront of the Foundation's activities. Through collaborative engagement and informed advocacy, the PAC aims to ensure that the Foundation's programs, activities, and strategic directions are aligned with the best interests of patients living with CML worldwide.

Members of the Patient Advisory Committee

1. James Davis (USA) – Jim lives with CML and is a clinical trial participant. He has served in several capacities with Leukemia Lymphoma Society in the USA.
2. Joannie Clements (USA) – Joannie lives with CML and is co-founder and Vice President of Mission at the CML Buster Foundation
3. Jerry Clements (USA) – Jerry is a CML advocate, co-founder and Chief Financial Officer of the CML Buster Foundation and treasurer and co-Chair CAB at CML Advocates Network
4. Conny Garnitz (Germany) – Conny is a CML patient advocate involved in the CML Patient Advocates Network and Leukämie-Online/LeukaNET e.V.
5. Viji Venkatesh (India) – Viji is Region Head for India & South Asia at The Max Foundation
6. Giora Sharf (Israel) – Giora lives with CML and is founder of the Israeli Patient Organization, co-founder of the Leukemia Patient Advocates Foundation hosting the CML Advocates Network
7. Jorge Mancilla (Chile) Jorge lives with CML and is pleased to contribute to this Committee

We are also pleased that Pat García-Gonzalez and Jan Geissler will remain as patient advocate advisors on the
iCMLf Scientific Advisory Board.

The patient advisory committee members will work to include more participants from Africa, Asia and Europe to ensure diverse, global representation.

Objectives of the Patient Advisory Committee (PAC)

  • Provide patient-centric advice
    The PAC shall provide patient-centric advice concerning the active programs and activities conducted by the iCMLf, ensuring that the patient perspective is integrated into all aspects of the Foundation's work.
  • Advise on future priorities
    The PAC shall advise the Board of Directors about future priorities for the Foundation in relation to the needs and impact for CML patients, offering insights and recommendations based on the lived experiences of individuals affected by CML.
  • Assess scientific and clinical merit
    The PAC shall participate in the assessment of the scientific and clinical merit of research and clinical proposals from a patient perspective to ensure that proposed initiatives are relevant, impactful, and beneficial to the CML patient community.
  • Assist in educational material production
    The PAC shall assist in the production of educational material, providing input, feedback, and guidance to ensure that educational resources effectively address the informational needs and preferences of CML patients and caregivers.
  • Support fundraising activities
    The PAC shall provide a patient perspective on the iCMLf's fundraising activities and public awareness programs, offering insights and recommendations to further the aims of the Foundation.

Partners within the iCMLf governance and scientific community to collaborate with the PAC