News

The Second Paediatric Expert Patients Training Workshop was a success!

The workshop organized by the TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJP RD), was held the past July 11th -15th at the University of Lyon (France) during the 2022 International Children’s Advisory Network (iCAN) Summit (please

September 14th, 2022|

KIDS Albania and KIDS Bari participation in the 2022 iCAN Summit

TEDDY Network’s young persons advisory groups (YPAG) from Albania (KIDS Albania) and Bari (KIDS Bari) have joined the 2022 International Children’s Advisory Network (iCAN) Summit that was held in-person last July 11th-15th in Lyon, France.  During these intense and productive 5 days of meeting, which was totally devoted to Rare Diseases (RDs), participants had the

September 12th, 2022|

FDA approval of Vaxneuvance vaccine for use in children

Vaxneuvance vaccine The Vaxneuvance, a 15-valent pneumococcal conjugate vaccine, produced my Merck & Co. received approval by the US Food and Drug Administration (FDA) for its use in children aged six weeks through to 17 years, making it the first pneumococcal conjugate vaccine approved in almost a decade to help protect paediatric populations

June 27th, 2022|

Second Paediatric Expert Patients Training Workshop

TEDDY is organising the “Second Paediatric Expert Patients Training Workshop” in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD).   The paediatric training workshop will be held during the iCAN (International Children’s Advisory Network) summit that will take place on July

June 24th, 2022|

The 1st First paediatric expert patients training workshop has been done

  The TEDDY Network in collaboration with EURORDIS and the Sant Joan de Déu Research Foundation in the framework of the European Joint Programme on Rare Diseases (EJPRD), has organised the first paediatric expert patients training workshop.  The workshop, held online, is now concluded and TEDDY is already preparing the second workshop of the 2022,

April 14th, 2022|

Training for patient representatives and advocates on leadership and communication skills

The “Training for patient representatives and advocates on leadership and communication skills” course is organised by Istituto Superiore di Sanità (ISS) in close collaboration with EJP RD task partners, open to patient representatives involved in the 24 European Reference Networks (ERNs), including members of the European Patients Advisory Groups (ePAGS), and other RD patient advocates. 

April 13th, 2022|

11th European Conference on Rare Diseases and Orphan Products (ECRD)

This patient-led rare disease policy official event of the 2022 French Presidency of the Council of the European Union will take place fully online from 27 June to 1 July, 2022 and will span over 5 half days.   This will provide the opportunity to expand outreach to key stakeholders, showcase strong political support, and build

April 13th, 2022|

International Children’s Advisory Network, Inc. (iCAN) 2022 Summit

The 2022 iCAN Summit presented by Jumo Health organized by the International Children's Advisory Network, Inc. (iCAN) will be held in-person in July 11th-15th 2022 in Lyon, France. This is the perfect opportunity to learn more about health, medicine, innovation, and science. With an emphasis on rare disease, this week-long summit is a terrific way

April 13th, 2022|