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.

Support and resources
Learn more about PTLD

Explore tools and resources to help understand PTLD.

Play
Play
Slick 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.

Types of support
Sources of help may include:
  • Your transplant team
  • Family and friends
  • Local or online communities
  • Nonprofit groups
  • Local support groups
  • Social workers
  • Therapists
  • Patient associations and patients groups
Educational support
Educational support
Your transplant team is the best source of information. They can give you answers specific to you because they know about your transplant, immunosuppressants, and PTLD.
For caregivers
For caregivers
Caregivers may also need any of the supports above. If you are a caregiver, don’t forget to acknowledge your own feelings and reach out for help. Find time and space to rest and recover.
Practical support
Practical support
Practical support means help for things in your day-to-day, such as:
  • 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.
Getting help for some of these tasks can help you stay focused on treatment and recovery. Examples of people who might be able to provide support include:
  • Family.
  • Friends.
  • People in your community or neighborhood.
  • Hospital and patient associations groups.
General well-being
General well-being
A new diagnosis can stir up a lot of emotions and stress. It’s normal to want help dealing with new information and situations. Let your transplant team know how you’re feeling (physically, mentally, and emotionally). They may recommend seeing a specialist based on your needs, e.g.,:
  • Physiotherapist or physical rehabilitation therapist.
  • Occupational therapist.
  • Mental health professional.
  • Registered dietician or nutritionist.
Other sources of support may include:
  • Support groups where patients can share personal experiences.
  • Nonprofit group resources for patients.
Questions you can ask
Questions you can ask your transplant team
  • Is there any support for me locally?
  • Who can I talk to if I’m struggling?
  • Who can help me find support and resources?
  • How might I talk to others about my diagnosis?
Patient support and resources
Find PTLD patient support near you

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

Glossary

Blood stem cell transplant

Epstein‑Barr virus (EBV)

Graft-versus-host disease (GvHD)

Immunophenotyping

Lymphocytes

Post‑transplant lymphoproliferative disease or disorder (PTLD)

Solid organ transplant

T-cell removal

Transplant rejection

White blood cells