Ressources for Your Patients and Donors

We know that your time is valuable and that caring for patients and donors is your priority. To support you in your daily work, we have put together a selection of helpful materials and information that you can easily share with patients and donors.

Please feel free to use and share any resources that may be helpful to them.

Communication guidelines for donors & patients

Donor and recipient information are confidential for at least two years post-donation. If cells were cryopreserved, the day of stem cell infusion is relevant for the anonymity period. The goal of maintaining donor and recipient anonymity is to ensure privacy for both, donor and patient.

At the same time, donors and patients can make a valuable contribution to our work by sharing their personal stories and experiences publicly. We therefore want to give them the opportunity to share their stories rather than restrict them from doing so. However, it is all the more important that everyone involved be aware of data protection and refer to the appropriate materials if they have any questions.

Please always consider:

• Under no circumstances may donor-identifying or potentially identifying information be shared, including but not limited to GRID number, date of birth (DOB), age, donor registry, internal donor identifiers, or any geographic or organizational details that could enable direct or indirect donor identification.
• Anonymous correspondence between donor and recipient is allowed immediately after cell infusion. Keep in mind that in some countries, no contact between donor and recipient is allowed. (Find more details in the Operational User Guide)

To support donors and patients in communicating safely and responsibly, we have developed clear and reliable guidelines for public communication. They provide guidance on what information and content can be shared while helping to ensure that:

• the personal data and privacy of donors and patients are protected at all times;
• sensitive, confidential or otherwise protected information is not disclosed;
• communication follows consistent and responsible principles.

You can play an important role in putting these guidelines into practice. Please help us raise awareness by sharing this guidance with donors, patients and relevant colleagues and by encouraging its use whenever questions around public communication arise.

The global guidelines provide a common foundation for all DKMS countries. Please reach out to DKMS colleagues listed for your country if you should have any questions.

We also updated the chapter "10.01 Anonymity Criteria for DKMS Donors and / or Patients of DKMS Registry" in our Operational User Guide.

Look Good Feel Better

Through the Look Good Feel Better patient program founded in 1995 we want to provide hope and courage to people with cancer, supporting them during treatment and positively influencing their healing process. The cosmetics seminars in more than 25 countries are offered to increase the well-being of people with cancer and give them a new zest for life. They provide help for self-help, which is intended to sustainably improve the self-esteem and thus the quality of life of cancer patients undergoing treatment.

Fnd out more information in our fact sheet and help share this program with your patients.

Patient Guide

Our brochure series, “Der Rote Ratgeber” serves as a guide for patients and their families. It also provides a wealth of information and background on the diagnosis of blood cancer, allogeneic stem cell transplantation, and explains the process of finding a suitable stem cell donor, among many other topics. As of now it's only available in German but we are working on an international version.

Feel free to share the link with german patients and familys.