NEWS

12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD)

The 12th Edition of the European Conference on Rare Diseases & Orphan products (ECRD) will take place on 15-16 May 2024 in Brussels and online. ECRD is a must-attend for anyone looking to remain informed and actively engaged in pioneering solutions to improve the...

16th TransplantChild Board of the Network

We are pleased to announce that in a couple of months the 16th Board of the Network will be held on 14th June in Madrid, Spain.  We would like to emphasize the importance of these meetings in evaluating the Network's operation and determining the next measures to be...

OPEN LETTER TO THE EU INSTITUTIONS AND OUR NATIONAL GOVERNMENTS TO STAND BY THE ERNS

ERN TransplantChild supports the Open Letter to the EU institutions and our national governments to stand by the European Reference Networks (ERNs) as our Network Coordinator, Dr. Paloma Jara, signed the document.This is an official “call on the EU institutions and EU...

LIVER TRANSPLANT for INBORN Errors of Metabolism – Sharing knowledge across ERNs

We are delighted to announce the Cross ERN Workshop (MetabERN – ERN TransplantChild – ERN RARE-LIVER) which will be held in Coimbra, Portugal on 8 to 9 June 2023. The workshop is aimed at paediatric, adult physicians, patient associations and patient advocacy...

14th TransplantChild Board of the Network

We are pleased to announce that in just over a month's time the 14th Board of the Network will be held on 11-12th May in Warsaw, Poland.  We would like to emphasize the importance of these meetings in evaluating the Network's operation and determining the next...

MEDIA

War and transplantation

During the 13th Board, Professor Piotr Kaliciński, from Children’s Memorial Health Institute of Warsaw, Poland lead a session in which he explained how they are living the current situation in Ukraine and how they are facing the increasing number of patients. Below you can find the link to a short movie that shows the situation of Ukranian children and the help they are receiving from the Institute. From TransplantChild we would like to thank Prof. Kaliciński and his team, as well as the centres that have offered their help in the care of the Ukranian patients.

Live (almost) like others

The documentary “Live (almost) like the others” by director Smail Beldjelalia, plunges into the daily life of 8 families, one member of which, child or adult, is suffering from chronic intestinal failure, and is treated by home parenteral nutrition or transplantation. With the collaboration of Professor Christophe Chardot and Professor Olivier Goulet, from Necker-enfants malades Hospital.

Interview with Rodrigo Adam and Terry Lourties

Paediatric transplantation is a complex process which requires a lifelong follow-up. However, receiving a paediatric transplantation did not prevent Rodrigo and Terry from living a normal life. Watch the full interview to learn more about their story.

ERNs Crosslink

Crosstalk among ERNs is an important task that could help improving healthcare for rare diseases. Therefore, it is necessary that the networks start collaborating and working together in their overlapping areas. 

Story of Paula

Paediatric transplantations require a complex, life-long follow-up. For patients like Paula, a girl from Barcelona, the European Reference Networks help get the best pre and post-operative care.

European Reference Networks: a ray of hope

In 2017 over 900 highly-specialised medical teams from all over Europe joined their forces in the European Reference Networks (ERNs). In this video, doctors and patients explain how the ERNs can tackle complex or rare diseases.

RELATED EVENTS

12th edition of the European Conference on Rare Diseases and Orphan Products (ECRD)

The 12th Edition of the European Conference on Rare Diseases & Orphan products (ECRD) will take place on 15-16 May 2024 in Brussels and online. ECRD is a must-attend for anyone looking to remain informed and actively engaged in pioneering solutions to improve the...

16th TransplantChild Board of the Network

We are pleased to announce that in a couple of months the 16th Board of the Network will be held on 14th June in Madrid, Spain.  We would like to emphasize the importance of these meetings in evaluating the Network's operation and determining the next measures to be...

LIVER TRANSPLANT for INBORN Errors of Metabolism – Sharing knowledge across ERNs

We are delighted to announce the Cross ERN Workshop (MetabERN – ERN TransplantChild – ERN RARE-LIVER) which will be held in Coimbra, Portugal on 8 to 9 June 2023. The workshop is aimed at paediatric, adult physicians, patient associations and patient advocacy...

14th TransplantChild Board of the Network

We are pleased to announce that in just over a month's time the 14th Board of the Network will be held on 11-12th May in Warsaw, Poland.  We would like to emphasize the importance of these meetings in evaluating the Network's operation and determining the next...

4th TransplantChild Workshop

We are organising the 4th TransplantChild workshop: “Novel Training Programmes in Paediatric Transplantation“. The workshop will have a hybrid format. It will be hosted by Centro Hospitalar Universitário do Porto, Portugal, but participants will also be able to...

ESPGHAN Annual meeting 2022

The 54th Annual Meeting of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), will be held in Copenhagen, Denmark, from Wednesday, 22nd June to Saturday, 25th June 2022, and ERN TransplantChild will be present as an exhibitor!If...

EJP-RD Information/Networking event on 25th of January

In the context of the EJP RD internal call for innovation projects in clinical trials methodologies in limited populations, that opened on 7th of December 2020 and will close on 3rd of March 2021, an “Information/Networking Event” will be...

47TH ANNUAL MEETING OF THE EBMT [VIRTUAL]

Starts:  Mar 14, 2021 8:30 AM (CET)Ends:  Mar 17, 2021 6:00 PM (CET) The 47th EBMT Annual Meeting will take place virtually, 14th-17th March, 2021. More than 6,700 delegates attend the EBMT Annual Meeting. The top-notch scientific programme for physicians, nurses,...

II Solidary Run for Paediatric Transplantation

We are pleased to invite you to join us on this event, participating in this Virtual Solidarity Race that will be celebrated during the 8th-12th of July. It will be an event full of energy and motivation where each one will run from their respective cities through a...

Rare diseases day 2020

Rare Disease Day is the official international awareness-raising campaign for rare diseases. Rare Disease Day takes place on the last day of February each year. The main objective of the campaign is to raise awareness amongst the general public and decision-makers...
3rd TransplantChild Workshop

3rd TransplantChild Workshop

Dear colleagues,   We are organizing the 3rd TransplantChild workshop: "Tolerance in paediatric transplantation and transition to adulthood". The workshop will be held on line, on Thursday, 11th November. The main aim is addressing training in the area of paediatric...

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