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  • 28th of October 2018 - Solidarity Run in Madrid for the paediatric transplantation, Madrid, Spain.
    28th of October 2018 - Solidarity Run in Madrid for the paediatric transplantation, Madrid, Spain.

     We are pleased to announce the Second Solidarity Run organized by La Paz Hospital. This year, the slogan will be "Madrid moves for the transplanted children", within the framework of the ERN TransplantChild network. It will be held on Sunday, October 28 from 9h, with options of 10Km, 6Km and 3Km. In addition to the children's race at 11h.

     

    More information

  • Join the RD-Connect Community

    In July 2018 the new RD-Connect Community was launched. This is an international association of individuals and organizations who would like to participate in shaping the rare disease field, promote data sharing and reuse and advance research. Membership is free of charge and open to organisations, research groups and individuals from diverse backgrounds, engaged in rare disease research anywhere in the world. Several ERNs have signed up as members, but we would be delighted to receive registrations from individual HCPs and research groups.

    Interested in joining? Fill out the registration form to become a member! For more information about the RD-Connect Community, please visit https://rd-connect.eu/about-rd-connect/become-member/

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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

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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