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ERNs' stories: Story of Paula

Paediatric transplantations require a complex, life-long follow-up. For patients like Paula the European Reference Networks bring a ray of hope.


European Reference Networks: a ray of hope for patients with rare and complex diseases, their families and doctors.

Paediatric transplantations require a complex, life-long follow-up. For patients like Paula the European Reference Networks bring a ray of hope.


European Reference Networks for rare and complex diseases

Video presenting the European Reference Networks

Next Events

  • 4th TransplantChild Board of the Network 4th and 5th of May 2018 - Madrid, Spain.
    4th TransplantChild Board of the Network  4th and 5th of May 2018 - Madrid, Spain.

    Please, find attached the updated version of the agenda of the 4th Board of TransplantChild. Available here

    In order to make this Board as productive as possible we have created some parallel sessions on Friday with the disposition shown in the agenda: Healthcare and Education & Training WGs will run at the same time; after them Research and Quality &Safety WGs will running at the same time; and finally, Networking, Knowledge & Management and Clinical Guidelines WGs run together.

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Patients Camp Krew 15-22 July 2017 - Toucha, Portugal

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APIR is hosting the second edition of Camp KREW, a common project with ALCER, OSOD and NVN, the national kidney patient associations of Portugal, Spain, Poland and the Netherlands. 

This camp is an opportunity for teenage kidney patients to meet and interact with other kids with the same health issues, with whom they will be able to share experiences, stories and ambitions. We hope this camp will boost the participants' self-esteem and self-acceptance, but our focus will not be on the disease, rather we will provide a program filled with fun moments, challenging activities and many opportunities to learn, laugh and relax.
When: 15 22 July, 2017
Where: Quinta da Fonte Quente, Tocha (http://www.centrodeferiasqfq.org/)
The camp facilities are located about 1.5 hours away from Oporto Airport and 2 hours away from Lisbon Airport. You will be able to reach the city of Coimbra from either airport by train. APIR will help you get from the airport to Coimbra and will provide transportation from Coimbra to Tocha.
Who: Each country will be represented by a team of 5 kidney patients ages 13-18 (transplant or pre- dialysis patients dialysis patients are not allowed for logistical reasons) + 1 nurse + 1 monitor
How much: Each country will pay APIR a fee of 2000€ which will cover lodging, meals, activities and insurance.

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