Candy Heberlein (1930-2021): Swiss pioneer of inclusion of patients’ opinions in the day-to-day research and therapy settings

SAKK is deeply saddened by the loss of Candy Heberlein who died on January 5, 2021.

Candy Heberlein (1930-2021): Swiss pioneer of inclusion of patients’ opinions in the day-to-day research and therapy settings

SAKK is deeply saddened by the loss of Candy Heberlein who died on January 5, 2021.

Candy Heberlein, founder and President of the Foundation for the Promotion of Bone Marrow Transplantation (SFK), died on January 5, 2021 of complications of COVID-19. We mourn the loss of a colleague who showed a distinctive commitment to patients with cancer.

Born in Berlin, the journalist set up the Foundation in 1994. From that date, she began advising affected individuals and acted as a point of contact and information for potential donors. She was committed to the right of patients to co-determine their therapy and worked to ensure that informed patients are able to play a partnership role with the team of physicians treating them and are perceived and respected as such.

Candy Heberlein was known as the Swiss pioneer of inclusion of patients’ opinions in the day-to-day research and therapy settings. When the Cancer League became the first coalition of patients in Switzerland, she was a founding member, a role she also played in the Swiss Eupati platform. She regularly organized meetings with affected individuals in order to gain a better understanding of their concerns.

Over the years, she established a network of self-help groups, “SOS Leukemia & Multiple Myeloma”, in seven cantons. Her short film “Gift of Life”, about patients undergoing bone marrow transplantation, explained the opportunities and limits of this highly technical therapy and created a basis for the medical and psychological discussions with patients that take place during the preparatory phases of a transplantation.

In 2002 Candy Heberlein was awarded the Recognition Prize of the Cancer League for her selfless and tireless dedication to the needs of people with cancer. The Candy Heberlein Prize, worth CHF 50,000 and regularly awarded during the SAKK semi-annual meeting, enabled the SFK to support research projects in all phases of stem cell transplantation and survivorship.

With the passing of Candy Heberlein we have lost a valued member of our oncology network. We take our leave from an endearing person in sincere gratitude for her services as a courageous champion of patients’ rights. Our sympathies go to her family and everyone who was close to her.

Candy

©Gianni Pisano

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