The first Austrian patient advocacy group dedicated solely to pancreatic cancer, Selbsthilfegruppe Pankreaskarzinom was founded in 2016 by Michaela Hartenstein. Two years after the death of her mom — she was diagnosed with pancreatic cancer at the age of 63 years — Hartenstein decided to quit her job within the pharmaceutical industry to fully support patients and families fighting this dreadful disease and to set up a patient advocacy group in Austria.

The main activities of the group are:

• Providing information via our recently launched website selbsthilfe-pankreaskarzinom.at, where we try to cover all relevant topics for pancreatic cancer patients and their families. We constantly reach out to pancreatic cancer specialists in Austria to establish a network and publish expert opinions to keep the website interesting and alive.
• We foster exchange amongst those affected by pancreatic cancer and provide support and help to pancreatic cancer patients and their families.
• We aim to improve earlier diagnosis by making the general public aware of the disease, its symptoms and associated risks.

Among the group’s recent activities, there is an online course on “Diet and Nutrition Needs for Pancreatic Cancer Patients,” soon to be launched. Although it is known that good nutritional care translates into quality of life and may even improve outcomes, in clinical practice there is often limited time to discuss this important topic with patients and their relatives.

 

As the main activity on World Pancreatic Cancer Day in 2017, the organization is planning to illuminate an official building in Vienna in purple to raise awareness and have a smaller gathering of survivors, family and friends who have felt the impact of pancreatic cancer.

 

Learn more at www.selbsthilfe-pankreaskarzinom.at.