Susan Thornton, Chair
Cutaneous Lymphoma Foundation
Susan Thornton is the CEO of the Cutaneous Lymphoma Foundation, also serves as Vice President of the Coalition of Skin Diseases and was elected Chair of the Board of Lymphoma Coalition on 31 January 2018.
Prior to joining the CLF as CEO, she served on the Board of Directors and provided consulting services to the Foundation. Ms. Thornton spent over 25 years in the healthcare technology field, holding various positions in consulting, marketing and sales.
She holds a business degree from The University of Pennsylvania Wharton School and completed the Non-Profit Certification Program at the University of Pennsylvania. In addition to her CLF Board service, she served on the boards of the Leukemia & Lymphoma Society, Eastern Pennsylvania Chapter, Tristate Multisport Association and the Sierra Club, Philadelphia Chapter. She is a native of Philadelphia and has completed 17 triathlons, raising money for cancer research.
Rosmarie Pfau, Vice Chair
Rosmarie Pfau is Founder and President of Lymphome.ch Patientennetz Schweiz (formerly ho/noho).
In 1999, Rosmarie was diagnosed with a follicular lymphoma and had to go through treatments, such as chemotherapy, immunotherapy, radioimmunotherapy, radiation and finally, after a lymphoma transformation, a high-dose chemotherapy with autologous stem-cell transplantation in 2006.
Due to the fact that there was a lack of information, resources and support for lymphoma patients and their relatives, Rosmarie set up the first lymphome.ch patient support group in Basel, Switzerland in May 2001, which was followed by other groups in different Swiss regions.
She is a founding member and executive board member of EUPATI CH, as well as being a EUPATI fellow. Rosmarie is a board member of the Cancer League Basel, a member of the patient advisory board of SAKK (the Swiss Society for Clinical Cancer Research), a member of the Swissmedic Working Group for patient and consumer organisations and other Swiss and European working groups and advisory boards.
Her main concern is helping to raise awareness and understanding of lymphomas; to establish and provide information; and to give emotional support and guidance to patients and relatives in the course of their journey.
Lymphome.ch became a member of the Lymphoma Coalition in 2004. Rosmarie joined the Lymphoma Coalition Board of Directors in 2014 and was elected Vice Chair in 2018.
Dr. Sarper Diler, Secretary
Professor DILER (M.D., PhD, CHTC) is a staff Professor at Istanbul University Medical Faculty and holds Hematopoietic Stem Cell Transplantation Coordinatorship Certificate of the National Marrow Donor Programme (NMDP, USA), consulting international Stemcell Transplantation centers at various universities and advisor at Turkish Social Security Institution (SGK). He is mainly working with KIR Genes, HLA polymorphism, disease associations and specialised in biobanking (bone marrow, cord blood, tissue).
Prof DILER is the co-founder and CEO of BIRKAN and Cancer Coalition of Turkey (KANKO). He is a member of Patients Advisory Committee (PAC) of ECCO (European Cancer Organisation), as well as responsible for the inter-organisational networking of Middle East-African Cancer Advocacy Leaders (CALAMEA) and member of World Marrow Donor Association (WMDA).
Sarper has been a Board member of the Lymphoma Coalition since 2011.
Guy Bouguet, Treasurer
France Lymphome Espoir
Guy Bouguet is President of France Lymphome Espoir. Guy is an Electronic Engineer who worked over 10 years in the Silicon Valley for one of the largest semiconductor company.
In 2000, Guy was diagnosed with follicular lymphoma and received several treatments such as radiation therapies, chemotherapies and immunotherapies. In 2003, he underwent an autologous bone marrow transplant and unfortunately, the lymphoma returned in May 2005. Guy had an Allograft in November of the same year.
In his search for information and understanding of his illness, he found very little that would satisfy his needs in France. So in February 2006, he founded France Lymphome Espoir.
Now in remission, Guy is dedicated to raising awareness of lymphoma, advocating for best access to care and providing information to patients. In 2011 Guy became a Board member of the Lymphoma Coalition.
Maja Kocić, Director
Limfoma LIPA, Serbia
Maja Kocic is current President of Lymphoma Patients’ Association LYPA- Serbian Organisation for lymphoma patients, family members and friends. She is a member of several other regional and international organisations. Maja earned her M.Sc. in Electronic Engineering at the University of Nis, Serbia. After graduation she was working at Department of Microelectronics as a teaching assistant.
In 2003, Maja was diagnosed with DLBCL- Diffuse large B-cell lymphoma, stage IV. She went through chemo, radiation therapy and biological therapy. After all therapies she needed a bone marrow transplant that had at the end of 2004. After her recovery, she joined LYPA eight years ago and has been active patient advocate ever since. She had devoted herself to patients’ advocacy and defense of patients’ rights.
Maja has been sharing the inspirational story of her survivorship in order to encourage, motivate and inspire not only lymphoma patients but also every audience. She and her team have implemented and managed a great number of successful social and educational campaigns in the field of lymphoma awareness, access to innovate treatment and lymphoma patient nutrition.
Maja believes in the power of kindness, knowledge and responsibility for achieving great goals. She was elected to the LC Board of Directors in 2016.
Lauren Pretorius, Director
Campaigning for Cancer, South Africa
Lauren Pretorius is the CEO and co-founder of Campaigning for Cancer NPC, an advocacy patient group formed in 2008 to lobby for the promotion and protection of patients’ rights with regards to policy, healthcare costs and healthcare delivery.
Pretorius has worked in the cancer civil society since 2005. She was the chief operating officer of Breast Health Foundation, a co-founder of Bosom Buddies and a consultant to the Prostrate Cancer Foundation of South Africa and various other cancer charities. Pretorius managed the pilot LIVESTRONG/American Cancer Society’s SEI Survivor Forum in South Africa and has represented South Africa as a Global Cancer Ambassador for the UN’s Resolution for Non Communicable Diseases. She chaired the Civil Society Commission at the National Department of Health’s NCD Summit and was a member of National Cancer Registry implementation team as well as a founding member of the executive committee of the Cancer Alliance.
As a specialist consultant, she assisted a number of non-profit organisations to apply business principles and marketing strategies to ensure their greater success and sustainability. From 2000 to 2003 she was contracted to the Nelson Mandela’s Children Fund on brand governance and fundraising partner. She was privileged to work with Nelson Mandela Foundation on the launch of their 46664 brand.
Karen Van Rassel, CEO
Karen has been the CEO of Lymphoma Coalition (LC) since 2010 and prior to that was ED of Lymphoma Foundation Canada since 2002. As one of the founding members of the Lymphoma Coalition, she has taken special interest in LC’s international growth and membership support since it’s inception.
Karen was involved in a number of children’s charities as Director of Corporate and Business Development as well as holding board positions before joining the healthcare sector bringing with her over 20 years of experience in the Marketing and Advertising industry.
Since November 2009, Karen has taken the global Lymphoma Coalition from a network of patient groups to an incorporated organisation with a global Board of Directors and Medical Advisory Board. Karen is a non-voting member of the LC Board of Directors.
The Coalition began with 4 member organisations in 2002 and has grown to 75 member organisations in 50 countries.
Last updated 02/2018