A Peek at ho/noho (Switzerland)

Until Rosmarie Pfau came along, there were no patient support groups for those with lymphoma living in Switzerland. Rosmarie is the president of ho/noho, a not-for-profit patient organisation that provides support for patients with lymphoma as well as their families. ho/noho stands for Hodgkin lymphoma and non-Hodgkin lymphoma.

“When I was diagnosed with follicular lymphoma (FL) in 1999, I was in the watch-and-wait situation and I was looking for a patient group to see how other patients coped. There was no patient group or information material about lymphoma. My doctor told me to start a patient group,” said Rosmarie.

Initially, Rosmarie didn’t do anything.

“I didn’t have a clue how to reach other lymphoma patients. And then another doctor helped me get started by sending out a letter to his patients with lymphoma inviting them to the first patient support group meeting,” she said. The first meeting of ho/noho took place in Basel in May 2001.

“I was very happy that this doctor helped me out. We had 14 patients at the first meeting which was for all types of lymphomas not just FL,” she said.

Rosmarie’s FL transformed to diffuse large B-cell lymphoma about five years after her initial diagnosis. She then received a number of chemotherapies, radiation and finally an autologous stem cell transplantation in 2006. Since then, Rosmarie has been in remission.

Over the course of time, more support groups were formed and the need for a formal not-for-profit organisation emerged. In 2005, a formal board of directors was put in place to oversee ho/noho.

“The board of directors is a mixture of patients and relatives with one physician member,” she said. In addition to the board of directors, there are six to eight volunteers who help out when they can. Everyone who works for ho/noho is a volunteer.

Rosmarie worked part-time in the legal field while acting as President of ho/noho until August 2014 when she retired. She now is a full-time volunteer at no/noho.

“Although it was challenging running ho/noho while working and receiving treatment, I think it’s what kept me going,” she said.

ho/noho’s Objectives

Moving forward, the plans are to provide more education as well as information about lymphomas, including clinical trials and the different therapies, for patients with lymphoma. Part of this initiative includes raising awareness among the general public about lymphomas including the signs and symptoms.

“My goal is that I want ho/noho to be seen as a source of lymphoma information in Switzerland and that it is the organisation people think of when talking or thinking about lymphoma,” Rosmarie said.

To achieve this, ho/noho will be hosting two education symposia in 2015. The first one was held in March 2015 in Geneva and the second one will be on September 12, 2015 to mark World Lymphoma Awareness Day.

The March meeting was the first for ho/noho in Geneva.

“No meeting has ever been held in Geneva, the French part of Switzerland,” she said.

Professor Pierre-Yves Dietrich, one of the speakers at the March meeting, had approached Rosmarie about having a patient information session in Geneva as he’d heard about the other patient information sessions organised by ho/noho. Professor Dietrich is the Director of the Oncology Centre at the University Hospital in Geneva.

The March meeting was an evening session with two other speakers: one talking about Hodgkin lymphoma and the other discussing stem cell transplantation.

“For 2016, I’m going to try and organise four education symposia in different parts of Switzerland,” she said.

Telephone Helpline

Patients and families looking for information can also call ho/noho’s Helpline which is operated by Rosmarie.

“I can answer most questions. If I can’t, I get in touch with our board’s medical adviser who may sometimes call the patient directly,” said Rosmarie.

Calls usually pertain to issues with side effects, help with psychosocial support and coping options.

“Sometimes patients call wanting to be connected to other patients in similar situations as not everyone wants to join a patient group,” she said.

The helpline can receive as many as two to three calls a day.

Value of Patient Group Meetings

Some of those who attended the very first meeting in 2001 still help out with the patient group meetings.

“Although some of them are not really ill anymore, they want to encourage newly diagnosed patients to come to the meetings so they can see that it’s possible to overcome the disease and have the courage to survive the therapy,” Rosmarie said.

In addition to the patient support group in Basel, there are patient support groups in Lucerne, St. Gallen and Zurich.

“We had groups in the Aarau region and in Bern. At the moment, they are not active. In Aarau and Lugano we have regional contact persons,” she said.

Rosmarie runs the patient groups located in Basel, Lucerne and St. Gallen; the Zurich group is run by another volunteer.

Patient group meetings are held based on patient needs.

“Some groups meet every month; others every two months. It’s whatever makes sense for patients,” she said.

Recognition of Services

Rosmarie’s efforts to help those with lymphoma have not gone unnoticed.

In February 2015, Rosmarie received an award from the organisers of Tumour Days 2015 in Winterthur. This award is given to institutions and individuals that have made great contributions to cancer research and treatment, as well as the care of patients with cancer and their families.

“This was a really big surprise and I was very touched to receive it,” Rosmarie said. The award is given out every two years.

Thank you Rosmarie for all the work you do through ho/noho – Schweizerische Patientenorganisation für Lymphombetroffene und Angehörige – to help those with lymphoma and their families.

 

May 26, 2015

 

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