Pru Etcheverry, Chair
Leukaemia & Blood Cancer New Zealand
Pru Etcheverry is CEO of Leukaemia & Blood Cancer New Zealand (LBC). She joined the organisation in 2002, and previously her career had been in the medical and pharmaceutical industry, her role prior to joining the organisation was in Business Unit Management in oncology and haematology. She has always worked in the health sector and originally trained as a registered nurse.
Pru leads a team of 18 in her local organisation.
For the last 5 years has served as Vice Chair of the Lymphoma Coalition. She also is a working party member of local coalitions including chair of a CANGO a group of eight national cancer charities.
LBC provides; patient support programmes, awareness programmes, information, education, advocacy and funds research and is the only support organisation locally providing these services in this area. Recent advances have seen the establishment of a blood cancer research unit at University of Auckland and the growth of the patient support team to a team of seven haematology specialised nurses.
Susan Thornton, Vice Chair
Cutaneous Lymphoma Foundation
Susan Thornton is the CEO of the Cutaneous Lymphoma Foundation and also serves as Vice President of the Coalition of Skin Diseases and was recently elected to the Board of the Lymphoma Coalition.
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.
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 specialized in biobanking (bone marrow, cord blood, tissue).
Prof DILER is the co-founder and CEO of KOKDER/BIRKAN and Cancer Coalition of Turkey(KANKO). He is a member of Patients Advisory Committee(PAC) of ECCO(European Cancer Organization), president of Myeloma Patients Europe(MPE) 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 is Secretary and Board member of the Lymphoma Coalition(LC) 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.
Rosmarie Pfau, Director
Schweizerische Patientenorganisation für Lymphombetroffene und Angehörige
Rosmarie Pfau is Founder and President of ho/noho – Swiss Organisation for lymphoma patients and relatives - (Association Lymphome.ch). Rosmarie worked many years as management assistant and responsible person in national and international companies and for several years as investigation officer in a central department of a cantonal prosecution. She is a Transactional Analysis and Kinesiology Practitioner.
In May 1999, Rosmarie was diagnosed with follicular lymphoma and had to pass several treatments, such as chemotherapies, immunotherapies, radioimmunotherapy, radiation and finally, after a lymphoma transformation in August 2006, a high dose chemotherapy with autologous stem-cell transplantation. Since then, Rosmarie is in remission.
After being diagnosed, her search for patient information material and a patient group was without effect, so in May 2001 she founded the first support group for Lymphoma patients in Basel, Switzerland. In the meantime, she has established ho/noho-patient groups and contact points also in other Swiss regions. Since 2002, she is a board member of the Cancer League Basel and Member of national and European Working Groups. In 2004 ho/noho became first Associate Member and after being a formal Association in 2005, full member of the Lymphoma Coalition. ho/noho is recognized as an umbrella organization by the Swiss Cancer League.
Her main concern is helping to increase the understanding of Lymphomas and reaching more patients to supply Information by means of brochures and educational symposiums, and to support patients and relatives during the disease and in their decision making process, so they do not feel alone. ho/noho is the only patient organisation in Switzerland providing these services.
Rosmarie is a member of the Lymphoma Coalition Board of Directors since 2014.
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.
Maja Kocić, Director
Limfoma LIPA, Serbia
Maja Kocic is current President of Lymphoma Patients’ Association LYPA- Serbian Organization for lymphoma patients, family members and friends. She is a member of several other regional and international organizations. 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 has recently elected to the LC Board of Directors.
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 organization with a global Board of Directors and Medical Advisory Board.
The Coalition began with 4 member organizations in 2002 and has grown to 69 member organizations from 46 countries.
Last updated 12/2017