Dear members and affiliated partners,

On February 21st we held the Extraordinary Board of ERN TransplantChild. During this meeting the representatives and the coordination team discussed the proposal for grants regarding the continuation of the ERN grant to support the activities developed as was explained during the 10th Board of the Network in Seville.

The information discussed during the meeting has already been sent to the representatives!

As it was announced in the Extraordinary Board of TransplantChild, from the DG Santé, they want you, the final users of the CPMS platform to get more involved in future activities and events related to the design of the future CPMS. They want to listen to the needs of the ERN and for this purpose they will be offering workshops that are mainly aimed at better understanding our environment. They have shared some illustrative questions on different topics for the ERN-specific workshops. If you are interested in being involved in the future of these activities, or if you want to propose additional topics of discussion that are of interest to the network, do not miss the meeting scheduled for March16th. Contact us at coordinaton@transplantchild.eu for the connection details!

Find below the proposed list of questions organised per topic

Last Thursday, 24th February we held our Monthly Live Case Discussion on the topic Failing Fontan. The cases for the discussion were presented by Dr Jesús Quintero, paediatric hepatologist at Vall d'Hebron University Hospital, and Dr Eduardo Zatarain, clinical cardiologist at Gregorio Marañón University Hospital. The next session is scheduled for Thursday, 31st March. We will be uploading further information on the TransplantChild website during the upcoming days.
If you want to join the discussion, or if you want to present a case in future sessions, please contact us at coordination@transplantchild.eu. We hope you could join us at the discussion and share your experience in the field.

We have already begun uploading to our e-learning platform the lectures presented during the 3rd TransplantChild Workshop on "Tolerance in Paediatric Transplantation and Transition to Adulthood", held on November 11th.
If you wish to have access to this and other TransplantChild courses, contact us at e-learning@transplantchild.eu and include your name, surname, hospital or institution and role, in order to get an e-learning user account.
If you were not able to attend the workshop, this is your opportunity to learn from cutting-edge experts on the field of "Tolerance monitoring and induction" and "Trasition of care".

The CMV in Paediatric Transplantation clinical audit is now close to completion. Thank you to all members who have already participated in the survey. If you have not, the deadline has been extended two weeks!
The survey consists of two parts: 1) A survey about your centre approach and resources related to CMV  infection/disease and 2) A clinical cases quick overview.
For the quick overview on CMV infection and / or disease episodes state the of art across ERN-TransplantChild members: please, include the last 10 transplant recipients who meet these criteria for each Transplantation program: 
*It is not neccessary to have been diagnosed with CMV infection and/or disease. 

1. Age at transplantation procedure: 0-18 years old.

2. Follow up after transplantation: at least 1 year.

Deadline: March 14th of 2022.
If you have any problem, do not hesitate to contact us at coordination@transplantchild.eu. Thank you for your collaboration.

The PETER e-learning course is already available on our Moodle platform. In this course, you will find all the necessary information to use the registry: training material, video tutorials, user manuals, etc.
If you do not have an e-learning account yet, please send us an email to e-learning@transplantchild.eu and we will create it for you.
 

On February 28th we celebrated Rare Disease Day. The idea is to raise awareness and promote research for the more than 7.000 rare conditions that affect over 300 million people around the world. By celebrating this day, the community hopes to advocate for rare disease research as well as gather support from the community for those impacted. Raising awareness and advocating for rare diseases is the best way to get involved in the community!

 

The ERN Exchange Programme 2021-2022 is currently underway. Its aim is to share knowledge and stimulate collaborations between healthcare professionals within the ERNs. Professionals can further their knowledge applying for an exchange with a centre that can provide the necessary knowledge, expertise or facilities. Over 1000 "Travel packages" of 5 working days are available to healthcare professionals who wish to pursue a short term training stay. In 2021 and 2022, three different rounds of exchanges will take place between professionals of Healthcare Providers that are members or affiliated partners of an ERN. A NEWSLETTER with more information about the programme has been issued. Don't miss this opportunity!

The European Joint Programme on Rare Diseases organises the International Course “Training on strategies to foster solutions of undiagnosed rare disease cases” that will be held online from 11 to 13 April 2022. The course aims to provide the participants with useful tools and knowledge on novel strategies to foster solutions of undiagnosed RD cases. If you would like to participate, register before the 6th of March.

The Networking Support Scheme (NSS) of the European Joint Programme on Rare Diseases is funding quarterly networking initiatives in the field of rare diseases and rare cancers, bringing together health care professionals, researchers, patient advocacy groups, Early Career Scientists and other relevant stakeholders.
The aim of the NSS is to encourage sharing of knowledge on rare diseases between health care professionals, researchers and patients in new or expanding research networks by funding networking events, and to enable or increase the participation of usually underrepresented countries in Europe in new and in expanding research networks on rare diseases or rare cancers.

TransplantChild webinars are a series of videos from ERN TransplantChild that promotes the dissemination of insights and knowledge regarding paediatric transplantation. We are always looking for ideas and topics, if you want to know about a particular topic or, even better, can share your knowledge about a topic: please get in contact with e-learning@transplantchild.eu and we will set a date!

Visit our YouTube channel to find more webinars

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