TransplantChild

Casa
España
Madrid
TransplantChild

Información de contacto, mapa y direcciones, formulario de contacto, horario de apertura, servicios, puntuaciones, fotos, videos y anuncios de TransplantChild, Organización sin ánimo de lucro, Paseo de la castellana 261, Madrid.

European Reference Network for Paediatric Transplantation, focusing on both Solid Organ Transplantation and Hematopoietic Stem Cell Transplantation which are low-prevalence and complex conditions that require highly specialized expertise and resources.

22/06/2026

👏 We truly thank anyone who has contributed to shaping the elaboration of the Patient Journey Transplantation, either disseminating our project or participating in our survey concerning its first stage “Waiting List Inclusion”.
We are glad and grateful that we have received 53 answers so far, which will allow us to delineate general conclusions and recommendations to better outline paediatric transplantation care pathways.

📣 We are now focusing our analysis on the SECOND PHASE - THE TIME SPENT WHILE ON THE TRANSPLANT LIST, WAITING FOR THE DAY OF THE TRANSPLANT TO COME.

Inclusion on the waiting list and the subsequent waiting period are two clearly distinct phases of the transplantation pathway. These two moments imply different feelings, emotions, needs and the identification of point of reference which we are investigating and in depth through two separate ad hoc surveys.

💫 If you are currently living the phase of the waiting list period or you have already gone through it, as a patient or as a parent, your experience does matter.
Please take a few minutes to answer our questions and let us know your story!

IMPORTANT: YOU CAN SELECT YOUR NATIONAL LANGUAGE IN THE TOP RIGHT SETTINGS.

📝 Questionnaire- Stage2: Waiting List Period
VERSION FOR PATIENTS
https://ec.europa.eu/eusurvey/runner/PatientJourneystage2-Patient

📝 Questionnaire- Stage2: Waiting List Period
VERSION FOR PARENTS
https://ec.europa.eu/eusurvey/runner/PatientJourneyStage2-Parents_caregivers

Njurförbundet Lietuvos vaikų vėžio asociacija „Paguoda“ TransDia-Sport Deutschland e.V. Association HTaPFrance AMFE - Association Maladies Foie Enfants Association Restart Zaklada za rijetke bolesti jetre Federación Nacional de Asociaciones Alcer Deporte y Trasplante España ASION - Asociación Infantil Oncológica de Madrid Somos Nupa Fundación Menudos Corazones

18/06/2026

📣 IMPORTANT: SAVE THE NEW DATE!

Our next live clinical discussion has been rescheduled on:

🗓 Thursday, 2nd July 2026
🕑 14:00 CET

Two different cases, both on complex paediatric living donor liver transplantation, will be presented by Dr. Daria Diehtiarova – Paediatric Transplant Surgeon at Non-profit enterprise “National Specialized Children’s Hospital” Ohmatdyt in Kiev (Ukraine).

To participate in the discussion write to [email protected] to receive the link.

17/06/2026

‼️ CALL FOR YOUNG PATIENTS!!!

If you are currently on the transplant waiting list, or if you have already undergone that stage of your transplant journey, please take a few minutes to answer our questionnaire.

Taking into account your experience makes a difference to our work and to many other patients.

SELECT YOUR PREFERRED LANGUAGE IN THE TOP MENU.

https://ec.europa.eu/eusurvey/runner/6a8a72e4-cda4-40ca-d741-82751d7511b5

12/06/2026

📣 The recordings of two of our past webinars are now available.

If you missed the chance to attend them when they were delivered, catch up on them now!

https://transplantchild.eu/previous-webinars/

10/06/2026

🚶‍♀️‍➡️🚶‍➡️🚶‍♂️‍➡️One of the several projects TransplantChild has been dedicating its resources and commitment to is the development of the Patient Journey Transplantation.

Six stages have been identified, each of them with their specific defining frames:
1) Waiting List Inclusion
2) Waiting List Period
3) Transplantation
4) Rehabilitation
5) Daily Life and Long-term Follow-up
6) Transition to adult care

🔎 The emotions, touchpoints and needs peculiar to the first phase – which implies the confirmation that transplantation is the only definitive therapeutic option and the formal inclusion on the transplant waiting list – have been investigated through a questionnaire addressed to patients and another one to parents.
The answers received so far have pictured existing information gaps, psychological and peer support needs and common emotional and logistic themes among the two different subjects.

We would like now to have many more responses, as a wider participation will lead our analysis to more representative and better delineated conclusions.

‼️ If you are - or your child is - currently on the transplant waiting list, or if you have undergone that stage, please take a few minutes to share your experience with us.
Your contribution in co-creating the Patient Journey Transplantation will also help to improve care pathways in paediatric transplantation.

IMPORTANT: YOU CAN SELECT YOUR NATIONAL LANGUAGE IN THE TOP RIGHT SETTINGS.

📝 Questionnaire- Stage1: inclusion on the Transplant Waiting List
VERSION FOR PATIENTS
https://ec.europa.eu/eusurvey/runner/6a8a72e4-cda4-40ca-d741-82751d7511b5

📝 Questionnaire- Stage1: inclusion on the Transplant Waiting List
VERSION FOR PARENTS
https://ec.europa.eu/eusurvey/runner/2dc6ed27-ba66-1907-1612-f3db53541779

Njurförbundet Lietuvos vaikų vėžio asociacija „Paguoda“ TransDia-Sport Deutschland e.V. Association HTaPFrance AMFE - Association Maladies Foie Enfants Association Restart Zaklada za rijetke bolesti jetre Federación Nacional de Asociaciones Alcer
Deporte y Trasplante España ASION - Asociación Infantil Oncológica de Madrid Somos Nupa Fundación Menudos Corazones

08/06/2026

💫 As in any European Reference Network on Rare Diseases, patients, families and patient associations play a key role in shaping the needs and priorities to be addressed concerning the different activities carried out at the European level: research, guidelines, tools and resources, educational materials, care pathways, trainings.

TransplantChild Patient Associations and Adolescents and Young Adults Committee is currently counting on 27 patients associations and 18 patients from 8 different countries, covering all paediatric solid organ transplantation programmes.
We are very much looking forward to welcoming more members, in particular representatives for the paediatric hematopoietic stem cell transplantation programme.

The Committee has started its regular online meetings since January 2026, and some of its members met in person in Madrid last May on occasion of the 20th Board of the Network.

💙🧡🩵 Every personal experience in paediatric transplantation of patients and their families matters.
Their contribution is crucial to our mission: improving the quality of life of transplanted children, adolescents, young adults and their families in the long term.

👥 If you are one of them, and you are interested in getting to know more about how you could contribute to TransplantChild’s mission, get in touch with us writing to:
[email protected]
[email protected]

Njurförbundet Lietuvos vaikų vėžio asociacija „Paguoda“ TransDia-Sport Deutschland e.V. Association HTaPFrance AMFE - Association Maladies Foie Enfants Association Restart Zaklada za rijetke bolesti jetre Federación Nacional de Asociaciones Alcer Deporte y Trasplante España ASION - Asociación Infantil Oncológica de Madrid Somos Nupa Fundación Menudos Corazones

05/06/2026

👥 Are you attending ESPGHAN 58th Annual Meeting, which will take place in Lille from 24th to 27th June?
TransplantChild will also be present and has organised a short in-person meeting on Friday 26th June 26 from 15:25 to 15:55.

💫 It will be a good opportunity to meet, present the Network by sharing some of the activities carried out and exchange initiatives and proposals.

For better coordination please confirm your attendance writing to [email protected]
Closer to the date, we will share the meeting location and practical details with those registered.

😀 We are looking forward to seeing you there!

04/06/2026

📣 We are glad to share the event organised by Necker–Enfants Malades Hospital in Paris (France), one of the centers belonging to our Network.

A morning of scientific conferences and discussions led by the transplantation teams, with presentations also given by the Patient Associations Association Petit Coeur de Beurre, AMFE - Association Maladies Foie Enfants and AIRG France.

It will be a key moment to exchange perspectives and highlight recent advances in transplantation, addressing both current practices and future challenges in the field, bringing together physicians, healthcare professionals, patient associations and patients.

Topics from the programme include:
🔹 Artificial Intelligence in transplantation
🔹 Advances in heart, lung, liver, kidney and intestinal transplantation
🔹 Pediatric organ donation
🔹 Novel immunological strategies, including CD38-targeted therapies and immunoadsorption
🔹Post-transplant intensive care
🔹 Long-term outcomes
🔹 Psychological support and quality of life for transplant recipients

A unique opportunity to foster multidisciplinary dialogue, share expertise and shape the future of transplantation.

🗓️ Friday, 12 June 2026
🕣 8:30 AM – 1:00 PM
📍 Auditorium Laennec, Necker–Enfants Malades Hospital, Paris

Read the full programme here:
https://www.calameo.com/read/00402182786527402e2af

03/06/2026

📣 For our monthly clinical discussion, Dr. Daria Diehtiarova – Paediatric Transplant Surgeon at Non-profit enterprise “National Specialized Children’s Hospital” Ohmatdyt in Kiev (Ukraine) - will present two different cases both concerning paediatric living donor liver transplantation.

👥 Give your contribution to these live discussions and share this invitation with any colleague you think could exchange consultations on the matters.

SAVE THE DATE!
🗓 Thursday, 25th June 2026
🕑 14:00 CET

✉️ IMPORTANT: Write to [email protected] to register and receive the link to join.

Dirección

Paseo De La Castellana 261
Madrid
28046

Página web

https://www.transplantchild.eu/

Notificaciones

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