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Survey about achondroplasia
We have designed a questionnaire with the purpose to better know the population connected to achondroplasia.
The questionnaire is optional and anonymous. The data obtained will be used for statistical purposes and to better understand the natural history of achondroplasia. Please consider answering.
If you would like to take the survey later, you can click on the link at the top "Register at BA"
Date -23rd June 2019
Location - ICCBH conference venue, Salzburg, Austria

The European Rare Bone Network is a new European project, patient-led, that is being established by 3 Patient organizations aiming to establish a productive partnership between relevant Stakeholders in Rare bone diseases namely:
 
  • Patient organizations and Umbrella organizations focused on Rare Bone diseases;
  • Pharmaceutical companies;
  • Other stakeholders, such as the European Reference Networks (ERNs), EURORDIS, EUPATIs, clinical and research experts, etc.
 
The Network meeting is being prepared by an Ad hoc organizing group, formed by OIFE, HPP Deutschland e.V., and ANDO Portugal. The aims are to promote active patient involvement in Rare Bone Diseases R&D, with input, support, and collaboration of all involved stakeholders and for the Network to become a unique, strong and long term triangular partnership between different stakeholders involved with rare bone diseases, led by patient organizations and with equal participation from each stakeholder group .
 
The First work meeting will take place on the 23rd June, in parallel to ICCBH conference, and key outcomes will be the official creation of the European Rare Bone Network, structure, principles of action, first projects, membership, as the work plan for the first two years. Are now confirmed to join the Network:
 
  • 12 patient organizations, among them ANDO Portugal;
  • 5 pharmaceutical companies;
  • ERNs for Rare bone disease (BOND) and rare endocrine conditions (ENDO);
  • The European Calcified Tissue Society (ECTS);
  • The International Conference for Children's Bone Health (ICCBH);
  • Clinical and research experts, among others.



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