Support and resources
PTLD is a rare disease. It can be hard to find support or resources that are relevant or are shareable with others. This page has some starting points, so you don’t have to go through this alone.
Explore tools and resources to help understand PTLD.
Types of support to consider
Each person’s situation and needs are different, and may change over time. It can be hard to ask for help, but there are people who want to help.
- Your transplant team
- Family and friends
- Local or online communities
- Nonprofit groups
- Local support groups
- Social workers
- Therapists
- Patient associations and patients groups
- Grabbing groceries.
- Cooking.
- Cleaning.
- Rides to and from appointments.
- Chores.
- Checking mail.
- Listening and taking notes at appointments.
- Looking out for symptoms and side effects.
- Family.
- Friends.
- People in your community or neighborhood.
- Hospital and patient associations groups.
- Physiotherapist or physical rehabilitation therapist.
- Occupational therapist.
- Mental health professional.
- Registered dietician or nutritionist.
- Support groups where patients can share personal experiences.
- Nonprofit group resources for patients.
Use the interactive map to find relevant PTLD patient group support organisations in your country.
AEAL
AEAL
Avda. de Córdoba, 15 - 2B
28026 - Madrid
Phone: 91 563 18 01
E-Mail: info@aeal.es
Website: https://www.aeal.es
FETCO
FETCO
c/ Isla Cabrera, 38 bajo dcha.
46026 - Valencia
Phone: 600 441 065
E-Mail: info@fetco.es
Website: https://www.fetco.es
La Lampada di Aladino
La Lampada di Aladino
Monza
Phone: 039 882505
E-Mail: info@lampada-aladino.it
Website: https://lampada-aladino.it
BDO – Bundesverband der Organtransplantierten e.V.
BDO – Bundesverband der Organtransplantierten e.V.
Postfach 1126
38711 Seesen
Phone: 05381 4921735
Fax: 05381 4921739
E-Mail: post@bdo-ev.de
Website: www.bdo-ev.de
Hubert Knicker
Hubert Knicker
Wikingerweg 6
32549 Bad Oeynhausen
Phone: 05734-666882
E-Mail: hubert.knicker@web.de
Website: www.Selbsthilfe-fuer-Menschen-vor-und-nach-Organtransplantation.de
Leukämiehilfe RHEIN-MAIN e.V
Leukämiehilfe RHEIN-MAIN e.V
Hasslocher Strasse 118
65428 Rüsselsheim am Main
Phone: 06142 3 22 40
Fax: 06142 17 56 42
E-Mail: buero@lhrm.de
Website: https://www.leukaemiehilfe-rhein-main.de
Sie erreichen uns telefonisch oder per Mail:
Mo – Do: 8:30 – 15:00 Uh, Fr: 8.30 - 12:30 Uhr
Besuche bitte nur nach vorheriger Absprache / Anmeldung
ALCER
ALCER
c/ Constancia, 35
28002 - Madrid
Phone: 915 610 837
E-Mail: informacion@alcer.org
Website: https://alcer.org
FNETH
FNETH
c/ Doctor Castelo, 31 - bajo D
28009 - Madrid
Phone: 917 396 872
E-Mail: secretaria@fneth.org
Website: https://fneth.org
UNIAMO
UNIAMO
Roma
Phone: 06440 4773
Phone: 06455 55179
E-Mail: segreteria@uniamo.org
Website: https://uniamo.org