Leadership & Governance

Susan Thornton is the CEO of the Cutaneous Lymphoma Foundation, and was elected Chair of the Board of Lymphoma Coalition on 31 January 2018. She has also served as a Founding Board Member/Vice Chair of the International Alliance of Dermatology Patient Organizations and Vice Chair of the Coalition of Skin Diseases. 

Prior to joining the CLF as CEO, she served on the Board of Directors and provided consulting services to the Foundation. Susan spent over 25 years in the healthcare technology field, holding various positions in consulting, marketing and sales.

Co-Founder of Lymphoma Philippines in 2016, a non-profit organization advocating for better healthcare access for lymphoma patients, Anna is currently in-charge of creating the communications strategy and implementing campaigns within the organisation while also being involved in its strategic direction and growth.

As a trained digital marketer who has worked in various industries (fashion, pharma, gaming, e-commerce, non-profit, entertainment, hospitality, etc.) for almost a decade, her expertise is producing creative materials that resonate within the patient community. For instance, her efforts have grown Lymphoma Philippines’ online Facebook community to over 1600 members and 3000 followers. Her experience was put to good use when Anna joined the first Lymphoma Coalition Community Advisory Board (CAB) in Asia-Pacific in 2021, focused on health literacy.

Guy is President of Ensemble Leucémie Lymphomes Espoir (ELLyE). He was diagnosed with follicular lymphoma in 2000. Following his research to understand his disease, Guy noted the lack of information available in France and went on to become an active patient advocate. He then co-founded France Lymphome Espoir (FLE) in 2006. FLE merged with another blood cancer patient group SILLC in 2021 and rebranded as ELLyE. Guy has been involved with Lymphoma Coalition for more than a decade, serving as a Director, Treasurer, and helping to establish Lymphoma Coalition Europe. Guy is also a Member of the EBMT Patient Advisory Committee, has participated in several Advisory Boards and is involved in many different education programs. 

Guy is an electronic engineer who worked over 10 years in Silicon Valley for one of the largest semiconductor companies, where he was Director of Market Development in Europe. In 2018, Guy graduated from the Patient University of la Sorbonne with a Health Democracy DU. Guy is dedicated to raising awareness of lymphoma, advocating for improved access to care and providing information to patients, marketing and sales.

An active volunteer with Lymphoma Action since 2012, Debbie is a member of the Insight Panel, helping to offer valuable feedback and a unique perspective on the charity’s plans and activities; the Reader Review Panel, reviewing patient information and ensuring that it is easily accessible to all; as well as being involved in the creation and delivery of its Live Your Life survivorship programme. She also acts as an ambassador, sharing her story and representing Lymphoma Action at community events. Debbie has been a member of the Lymphoma Coalition Community Advisory Board (CAB) from its inception in 2019, as well as other educational activities with pharmaceutical partners, helping to shape clinical trials and patient support programs with her well-articulated fair and balanced insights.

Debbie previously worked in the education sector, in primary and secondary schools, specifically assisting students with special educational needs. Hence, she is passionate about the accessibility of information and the role it plays in equitable care, as well as ensuring everyone has a voice. 

Kristina is Co-Founder and long-time president of the Slovenian Association of Patients with Lymphoma and Leukemia and is currently Managing Director. As a graduate economist and experienced expert in marketing and project management, she is leading the development and implementation of numerous quality and innovative support programs to complement the medical treatment of blood cancer patients. From 2016 to 2021 Kristina was the president and currently is the vice-president of the Association of the Slovenian Cancer Patients’ Organizations, Onko Net. She is a member of the Patients’ Council of the Oncology Institute Ljubljana and a member of the Council for the Supervision of the National Cancer Control Program at the Ministry of Health of the Republic of Slovenia. She has also been a member of the board of directors of Myeloma Patient Europe. For the successful design, management, and implementation of a national fundraising campaign for the purchase of a CAR T-cell therapy device, alongside a dedicated clinician Dr Samo Zver, she was awarded the prestigious 2021 Citizen’s Prize by the European Parliament for contributions to solidarity and the pan-European health progress of cancer patients. This effort ensured this novel treatment is available to patients in Slovenia

A childhood leukaemia survivor, Moubarak founded the Nigerien League for the Fight against Cancer to improve cancer care and prevention in Niger. In this role, he coordinates the iECHO Project (Extension for Community Healthcare Outcomes) in Niger, which is a collaborative model of medical education and care management that helps clinicians provide expert-level care to patients wherever they live. Additionally, Moubarak is a member of the African Steering Committee of the World Patient Alliance and an active member of the Union for International Cancer Control (UICC), including completing their Master Course Certificate on Advocacy for Better Cancer Control.

Moubarak has a Bachelor’s Degree in Fundamental Public Law from Amadou Hambate Ba University and is currently pursuing his Master’s Degree in Public Law. He has authored six books, including Les estampilles du destin: Roman suivi de poèmes about the impact of leukaemia on his life.

Dr Frederik Vernimmen is a radiation oncologist with over 40 years of experience. While no longer in clinical practice, during his career he practiced in South Africa, Ireland, and Belgium, where he continues to be registered. Dr Vernimmen was also an Associate Professor and Head of Division of Radiation Oncology, Faculty of Health Sciences, at the Tygerberg Campus of the University of Stellenbosch in South Africa. He has supervised and trained residents and fellows in radiation oncology, including some from other African nations to ensure they had the best skills to treat those in their own countries. He has authored numerous scientific articles in his area of radiotherapy and presented at national and international meetings. Dr Vernimmen has been a reviewer and editorial board member for leading radiology journals and has held leadership positions in various health-related committees and boards.

Now retired from practice, he currently serves on the board of Hodgkin and non-Hodgkin lymphoma vzw, one of Lymphoma Coalition’s Member organisations in Belgium.

Sharon is CEO of Lymphoma Australia. With her 20 years of experience in the field, she has developed a deep understanding of lymphoma, patient experiences, and the broader policies of healthcare systems. Sharon has been a health consumer representative in several stakeholder meetings and committees in Australia and internationally, with the most recent appointment being a newly created Commonwealth Government committee to co design with the government and Medicines Australia recommendations for ensuring the patient voice is appropriately recognised within the health care system. Sharon also works closely with the clinical community, including the successful nurse education and engagement program to upskill all nurses caring for lymphoma patients and to connect them to Lymphoma Australia services for their patients.

Prior to her current role, Sharon worked with a private health insurance company in relationship and strategic management and was also a physical education teacher and Director of a Sport and Recreation Company. Sharon is extremely passionate about ensuring all Australians have equitable access to information and medicines.

Lorna was appointed CEO of the Lymphoma Coalition in December 2018, to provide vision and leadership for the 83-member strong organisation, having previous been the Coalition’s Director of Strategic Communications and Engagement. Lorna has successfully held senior leadership roles in health charities for more than twenty years and has a diverse background in patient advocacy, mission development, communications, and strategic planning.

Her efforts have been focused on haematological cancers since 2003, at a national (Canada) and global level. Lorna is recognized and respected for strong leadership skills, breadth of knowledge, critical thinking, and patient-focus.

A self-identified data wonk, the rich data procured from the biennial Lymphoma Coalition Global Patient Survey on Lymphomas and CLL allows Lorna to truly understand and report on the global patient experience, by subtype, by therapy area, by geographic area, by gender and by age.

As a result of her years of experience in evidence-based advocacy and especially in the haematology field, she is frequently asked to present on patient experience, emerging trends and important issues in the lymphoma and CLL landscape.