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Friends & Relatives
HELP FOR
SELF-HELP

At that very first moment, the diagnosis of blood cancer is a shock for each patient and their relatives, following by numerous questions and fears/concerns regarding thoughts of the pending treatment. We would like to answer some of these questions for you on the following pages.

In the form of the Red Guidebooks "Roten Ratgebern" DKMS has crafted two guides for those affected and their relatives, which you can order from us free of charge (see link at the end of „Helpful links“). You will find detailed information of help offers here (Roter Ratgeber, Volume 2) as well as information on the procedure forfinding a stem cell donor (Roter Ratgeber, Volume 3).

Please choose your topic

Knowing where to look for the answer is the first step.

The search for answers to the numerous questions takes a lot of time. Knowing where you have to search is already the first step. In order to make your search for further information and support offers easier, we are providing you with some addresses here.

Federal Associations

The two associations listed here are Federal Associations for children and/or adults who are suffering from cancer. Both associations will also provide you with several tips regarding support offers in your region.

DLH Deutsche Leukämie- und Lymphom-Hilfe e.V. (German leukemia and lymphoma support association)
Federal association of self-help organizations to support adults with leukemia and lymphoma e.V.
http://www.leukaemie-hilfe.de

Deutsche Kinderkrebsstiftung (German Child Cancer Foundation)
Telephone: 0228-91394-0
info@kinderkrebsstiftung.de
http://www.kinderkrebsstiftung.de

 

Support offers and Self-help groups

Aktiv gegen SCHEISSKREBS.de gem. e.V. (Active against „Damn“ Cancer)
An association to support children, teenagers and young adults who have cancer.
http://www.scheisskrebs.de

APMM Arbeitsgemeinschaft Plasmozytom / Multiples Myelom (Work Group Plasmocytoma/Multiple Myeloma)
Since 1999, the APMM has been offering experienced myeloma patients and self-help groups actual information on the disease and therapy ofthe multiple myeloma on its Internet site as a network for everyone who hasto deal with this disease.
http://www.myelom.org/startseite.html

Berg und Tal e.V.
Self-help group for patients and relatives before and after bone marrow or stem cell transplantations, Essen
http://www.bergundtal-ev.de

Christian Blatt
Homepage of the patient
http://www.christian-blatt.de

Elterninitiative krebskranker Kinder Nürnberg e.V. (Parents’ initiative for children with cancer)
http://www.ekk-nuernberg.de

Elternverein für krebskranke Kinder und ihre Familien in Ostfriesland (Parents‘ Association for children with cancer and their families in East Frisia)
http://www.ev-krebskranke-kinder.de

Förderverein zugunsten krebskranker Kinder e.V. Krefeld (Sponsorship association tothe benefit of children with cancer)
http://www.krebskinder-krefeld.de

Hilfe für krebskranke Kinder Frankfurt e.V. (Help for children with cancer)
http://www.hilfe-fuer-krebskranke-kinder.de

Hilfe für krebskranke Kinder e.V., Hilfsgruppe Eifel (Help for children with cancer)
http://www.kinderkrebshilfe-eifel.de

Hilfe für krebs- und schwerstkranke Kinder e.V. (Help for children with cancer and terminally ill children)
Marita Neumann
Zur Warthe 11
33106 Paderborn
Germany
Tel.: +49(0)5251-9952

Krebs-Kinder in Not e.V.(Children in need with cancer)
Elterninitiative Lüchow-Dannenberg (Parents‘ initiative)
http://www.krebs-kinder-in-not.de

Leukämiehilfe Rhein Main e.V. (Leukemia support)
The Leukämiehilfe (leukemia support) Rhein-Main, has been working closely with the DKMS ever since its establishment. It has several regional groups, among others, in Wiesbaden, Rüsselsheim and Aschaffenburg.
http://www.leukaemiehilfe-rhein-main.de

Leukämie-Initiative Bonn e.V. (Leukemia initiative)
Katja Martini
Haager Weg 38 A
53127 Bonn
Germany
Tel.: +49(0)228-283931
Leukaemie-Initiative-Bonn@t-online.de

Max Armbrecht Leukämiehilfe e.V. (Leukemia support)
Dr. med. Ulrich Armbrecht
Im Roth 19
97688 Bad Kissingen
Germany
Tel.: +49(0)971-808118 (d)
Tel.: +49(0)971-66219 (p)

Münchener Elternstiftung (Munich-based parents‘ foundation)
A local support organization
http://www.stiftung-lichtblicke.de

Selbsthilfegruppe krebskranker Kinder Amberg/Sulzbach (Self-help group for children with cancer)
Gerda Schommer
Weiherzanter Weg 1
92260 Amberg/Sulzbach
Germany
Tel.: +49(0)9628-923861
http://www.krebskranker-kinder-amberg-sulzbach.de

S.E.L.P. e.V.
A self-help association to support adult patients with leukemia and lymphoma e.V. Münster and Nürnberg
http://www.selp.de

Verein zur Hilfe leukämiekranker Kinder e.V. (Association to support children with leukemia)
A self-help association forthe parents of children with cancer in Ostrhauderfehn
www.leukin.net

Wolfsburg hilft e.V. (Wolfsburg helps)
A sponsorship association for adults with diseases and stem cell transplantations
http://www.wolfsburg-hilft.de

 

You can find further addresses under:

Bundesverband Verwaiste Eltern in Deutschland (Federal association for bereaved parents in Germany)
Support for parents and other relatives who are mourning the loss of a child "Mourning support is always life support” ("Trauerbegleitung ist stets Lebensbegleitung").
http://www.veid.de


"Joy of Life" - Seminars
The non-profit organization DKMS LIFE is pursuing the goal of encouraging women with the disease to embrace life and the treatment’s consequences. Cancer treatment with chemotherapy or radiation therapy leaves serious, albeit temporary, changes to one’s appearance such as hair loss, loss of eyelashes and eyebrows, or skin irritations. The DKMS LIFE cosmetic program offers self help. It’s all about feeling more confident and looking good.
http://www.dkms-life.de

Information and counselling addresses

Deutsche Kinderkrebsstiftung, Bonn (German Child Cancer Foundation)
Tel.: +49(0)228-91394-0
info@kinderkrebsstiftung.de
http://www.kinderkrebsstiftung.de

Deutsche Krebsgesellschaft e.V., Frankfurt (German Cancer Society)
Tel.: +49(0)69 - 630096-0
online-anfragen@krebsgesellschaft.de

Beratung über die Landes-Krebsgesellschaften (Counselling by the Regional Cancer Societies)
http://www.krebsgesellschaft.de

Deutsche Krebshilfe e.V., Bonn (German Cancer Support)
Tel.: +49(0)228-72990-0
deutsche@krebshilfe.de
Information service telephone no. 0228-72990-95
Mondays-Thursdays9 a.m. to 4 p.m., Friday from 9 a.m. to 3 p.m.
Extensive brochure offers -The Blue Guidebook ("Die blauen Ratgeber")
http://www.krebshilfe.de

Deutsche Leukämie- und Lymphomhilfe e.V., Bonn (German Leukemia and Lymphoma Support)
info@leukaemie-hilfe.de
Counselling, patient support telephone: +49(0)228-39044 - 0
Mondays-Fridays 9 a.m.-12 + 2-4p.m.except for Wednesday afternoon
Extensive, specialized literature references
www.leukaemie-hilfe.de

Jugendinformationsportal SZT Stammzelltransplantation "Alles was Du wissen musst" des Zentrum für Kinder- und Jugendmedizin Heidelberg (Youth Information Portal Stem Cell Transplantation „Everything you need to know“ of the Center for Children and Youth Medicine)
Tel.: +49(0)6221-568379
renate.sedlak@med.uni-heidelberg.de
http://www.szt-info.de/

Krebsinformationsdienst, Deutsches Krebsforschungszentrum (Cancer Information Service, German Cancer Research Center)
Im Neuenheimer Feld 280
69120 Heidelberg
Germany
Tel. (toll-free within Germany): 0800 – 420 30 40. Daily from 8:00 a.m. to 8 p.m.
krebsinformationsdienst@dkfz.de
www.krebsinformationsdienst.de
www.krebsinformation.de/

Kompetenznetz akute und chronische Leukämien (Competence Network for Acute and Chronic Leukemia)
Clinic of the J.W. Goethe-University Frankfurt
Tel.: +49(0)69 - 6301 6365
info@kompetenznetz-leukaemie.de
http://www.kompetenznetz-leukaemie.de

Kompetenznetz maligne Lymphome (Competence Network for Malignant Lymphoma)
Clinic of the Universität zu Köln
Tel.: +49(0)221 - 478-7400
lymphome@medizin.uni-koeln.de
http://www.lymphome.de

Psychosocial Support

Given the burden of the disease it is not unusual for patients and relatives to also require psychosocial support in addition to the medical treatment.

Deutsche Arbeitsgemeinschaft Psychosoziale Onkologie e.V. (German Work Group for Psychosocial Oncology)
(dapo), Münster
Tel: +49(0)700 - 20006666
dapo-ev@t-online.de
The German Work Group for Psychosocial Oncology („Deutsche Arbeitsgemeinschaft Psychosoziale Onkologie e.V.“) informs about the special field and procures local contact partners.
http://www.dapo-ev.de

Psychotherapie-Informations-Dienst (PID) (Psychotherapy Information Service)
Am Köllnischen Park 2
10179 Berlin
Germany
Tel.:030 / 2 09 16 63 30
pid@dpa-bdp.de
http://www.psychotherapiesuche.de

Der Berufsverband Deutscher Psychologinnen und Psychologen (Professional Association of German Psychologists) procures addresses of psychotherapists (you can enter "tumor disease" as a search criterion here)
Personal Counselling
Mondays + Tuesdays 10 a.m.–1 p.m. + 4–7 p.m.
Wednesdays + Thursdays1 -4 p.m.

Krebsberatungsstellen (Cancer Counselling Centers)
You can obtain addresses of cancer counselling centers from the cancer information service, Heidelberg
http://www.krebsinformation.de/psychosoziale_beratung.html

LebensWert e.V., Köln (Worth Living)
Tel.: +49(0)221-478-6478
The "Haus LebensWert" (House Worth Living) at the University Clinic of Cologne provides psycho-oncological offers.
http://www.vereinlebenswert.de

OnkoKids online
Information and communication sites for children and teenagers with cancer as well as their brothers, sisters and families
http://www.onko-kids.de/

Social Law/Security Information

Brochure "Guide to Social Services" online
http://www.krebshilfe.de

Internet Forums for Persons Affected

The sharing of information with other persons affected via Internet can be a good supplement to other communication options.

Krebs-Kompass, Volker Karl Oehlrich Gesellschaft e.V. (Cancer Compass)
http://www.krebs-kompass.org/Forum/

Deutsche Leukämie- und Lymphomhilfe e.V., Bundesverband der Selbsthilfeorganisationen (German Leukemia and Lymphoma Support, Federal Association of the Self-Help Organizations)
http://www.leukaemie-hilfe.de

Projekt "Leukämie- und Knochenmark-/Stammzelltransplantation" (Leukemia and Bone Marrow/Stem Cell Transplantation Project), Holger Bassarek
http://www.leukaemie-kmt.de

"Die Online-Gemeinschaft zum Thema Leukämie" (The online community for the leukemia issue), Jan Geissler
http://www.leukaemie-online.de

Arbeitsgemeinschaft Plasmozytom/Multiples Myelom (Work Group for Plasmocytoma/Multiple Myeloma)
http://www.myelom.de/forum/index.html

Bone Marrow and Stem Cell Transplantation Centers

ZKRD Zentrales Knochenmarkspenderregister Deutschland (Central Bone Marrow Donor Registry Germany)
www.zkrd.de

You can find detailed information about support offers for relatives in our Red Advisor/Roten Ratgeber “Diagnosis with Leukemia & Lymphoma. What now?“. Only available in German.
Order now free of charge
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Readable and Informative

Hermann Delbrück, among others, Knochenmark- und Stammzelltransplantation nach Krebs, Rat und Hilfe für Betroffene und Angehörige ("Bone marrow and stem cell transplantation after cancer, advice and support for persons affected and their relatives”)
270 pages,2nd revised and expanded edition 2005, EUR 22. Can be obtained free of charge for those affected here at DKMS. The book clarifies all aspects of the acute and aftercare phase in an easily comprehensible way, including psycho-social questions.

 

Roter Ratgeber (Red Advisor), Volume 2
Diagnosis with leukemia and lymphoma– What now? A guide for those affected and relatives, published by the DKMS Foundation for Donating Life as Volume 2 of the series "The Red Guidebook/Der Rote Ratgeber," 50 pages, June 2005. It can be obtained free of charge from DKMS for those affected and self-help groups. This guidebook should serve as a type of "First Aid" after the initial shock of the diagnosis. Patients have their say as they convincingly share their experiences and their way of coping with the situation. Furthermore, social and psychological help is identified in compact form that simplifies one’s orientation process in this "foreign landscape" to the greatest extent possible.

 

Roter Ratgeber (Red Guidebook), Volume 3
The search forthe matching stem cell donor. A guide for those affected and relatives, published by the DKMS Foundation for Donating Life as Volume 3 of the series "The Red Guidebook/Der Rote Ratgeber", 43 pages, June 2007. It can be obtained free of charge from DKMS for those affected and self-help groups. This guidebook should eliminate the uncertainty of those affected while waiting for the matching stem cell donor. The complex search with all institutions involved is illustrated in an understandable way. Patients talk about their experiences and their way of coping during interviews. Furthermore, social and psychological help is identified in a compact form that simplifies one’s orientation process in this "foreign landscape" to the greatest extent possible.

 

Roter Ratgeber(Red Guidebook), Volume 4
Dr. Arnd Pannenbecker, Legal Framework for Blood Stem Cells. Requirements and Problems of the Tissue Law, published by the DKMS Foundation for Donating Life and the DGHO (German Organization for Hematology and Oncology) as Volume 4 of the Series "The Red Guidebook/Der Rote Ratgeber," 113 pages, July 2008. It can be obtained free of charge from DKMS for those affected and self-help groups.

To date, a uniform Tissue Law does not exist in German legislation as animplementation of the EU Directive 2004/23/EC. Instead, the distribution of contents to laws pertaining to transfusion, transplantation and medicinal producas well as the distribution of further details in two additional ordinances is creating massive non-transparency. Bone marrow and peripheral blood stem cells are not handled in a standard way by legislators in the blood stem cell transplantation sector, and appropriate regulations are lacking for the import segment. In addition, an unnecessary expansion of the demand for regulation of the EU directive has resulted in admission requirements for tissues and cell preparations in accordance with pharmaceuticals. As a consequence, all of this leads to a lack ofpatient care at the national and international levelswithin the scope of stem cell transplantations.

 

Tanja Diamantidis, Den Krebs bewältigen und einfach wieder leben, wie Sie die Angst zurücklassen und Ihre Lebensziele wieder finden.(Overcoming Cancer and Simply Living Again, How You Leave Worries Behind and FindYour Life Objectives Again)

167 pages, published in 2004, EUR 17.95. The author provides very descriptive and tried and proven examples based on her psycho-oncological work in a rehabilitation clinic and she lists exercises to cope with the illness and to get back to everyday life. She continuously encourages you to find your own, individual path.

 

Michael Begemann, Monika Begemann-Deppe, Leben mit Leukämie - Ratgeber für Patienten und Angehörige (Living with Leukemia – Guidebook for Patients and Relatives)
206 pages, published in 1994, revised edition 2000, EUR 24.95. Among others, the book contains information on the composition and function of blood, on general diagnostic and therapeutic options and on the individual types of leukemia. Furthermore, the book provides information on the psychological reaction patterns and psychosocial problems that are connected with the establishment of the diagnosis.

 

Herbert Kappauf, Walter Gallmeier, Nach der Diagnose Krebs - Leben ist eine Alternative (Afterthe Diagnosis with Cancer – Life is an Alternative). Published by the German Cancer Society.
276 pages, published in 1995. Completely updated new edition 2000, Paperback. EUR 15.50. Based on their experience as oncologists at the Clinic in Nuremberg, the authors have written an exceptionally understandable and realistic guidebook for persons with cancer. A classic among the guidebooks.

 

Gerhard Trabert, Als der Mond vor die Sonne trat (When the Moon Passed in Front of the Sun)
24 pages, published in 2001 by Editions Mathieu. EUR 10.20. This book vividly describes the key forms of therapy in an understandable way for children. A tremendous help for adults who are suddenly confronted with cancer and who want to overcome their speechlessness towards children.

 

Anke Schneider, Sieh mal, die Sonne! - Tagebuch einer Chemotherapie (Look, the Sun is Out! – Diary of a Chemotherapy)
318 pages, published in 2003, EUR 13.50. At the age of six, Annika came down with leukemia. In a very touching, honest and extremely personal way, she entrusted her mother with a diary during this intensive time.

 

Sally Nicholls, Wie man unsterblich wird – jede Minute zählt (How to become Immortal – Each Single Minute Counts)
Paperback from the series of Hanser, audio book version by IGEL-RECORDS. It is about eleven-year-old Sam, who has leukemia and who writes down observations, questions and thoughts in a diary during the last months of his life. His resolution: to scientifically document his death for future generations. After numerous chemotherapy sessions, he is finally back at home and receives home education together with his friend Felix, who has cancer, too. The teacher gives them both an unusual task. They should create a list of things that they would like to experience. With great enthusiasm and zeal, both young boys tackle the task – a selection from their wishes: "become a famous frog expert,""have a girlfriend" and "set a new world record."Family and friends help to make these things happen. The story by Sally Nicholls, born in 1983, conveys courage and a zest for life despite the tragic topic. Alongside the classical print edition (208 pages, EUR 8.95, it was awarded,among other things, the 2008 Jahresluchs (Annual Lynx) prize by the German newspaper Die ZEIT); it is also available as an audio book (77 minutes, EUR 12.95). This was recently awarded the German Audio Prize 2010 in the category of "Best Children’s Audio Book."

 

Eric-Emmanuel Schmitt, Oskar und die Dame in Rosa (Oskar and the Lady in Pink)
104 pages, published in 2003, EUR 13.80. Ten-year-old Oskar has leukemia and he knows that he is going to die. Both his parents as well as his doctors are not straightforward with him. The "Lady in Pink" is the unconventional and age-wise companionduring the last days of his life.

 

Kleines Wörterbuch für Leukämie- und Lymphom-Patienten (Small Dictionary for Leukemia and Lymphoma Patients)
Published by the German Leukemia and Lymphoma Support Organization, where it can be obtained free of charge, published 2004.
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