Working together with Patient Organizations is essential to collect data that matters to patients and families. If you are a patient representative and you would like to collaborate with EuRR-Bone , please contact us. If you are a patient and you would like to add your data to the registry you can also contact us.
At this moment patients can contribute in 2 ways:
- Contributing within the General collection of information (as not in all conditions specific modules are present), click here for more information and instructions
- Contributing within the Condition specific module, the detailed module for your condition, click here for more information and instructions
ANDO has a specific part of their website dedicated to EuRR-Bone, click here to visit. ANDO and more specifically Ines Alves has been very active in our project being co-chair of Work Package 5 on patient outcomes and the vertical theme of Achondroplasia.
The Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association for organizations dealing with with the rare disease Osteogenesis Imperfecta (OI). OIFE is very well represented in EuRR-Bone. Rebecca Skarberg is co-leading Work Package 5 on patient outcomes. She also takes part in the vertical theme OI together with Ingunn Westheim , Taco van Welzenis and Claudia Finis.
The International XLH Alliance (IXLHA) consists of more than 23 member organisations and represents international patientgroups for individuals affected with X-linked Hypophosphatemic Rickets and related disorders.
IXLH has been participating in the vertical theme of hypophosphatemia/XLH with active participation of Oliver Gardiner and Tenna Toft Sylvester. Tenna also acts as patient representative in our data access committee.
The purpose of Care4Bones is to promote quality of life for people with rare bone diseases, for now focussed on Osteogenesis Imperfecta (OI). C4BB support sknowledge sharing and make collaboration on research and healthcare improvement easy.
C4BB has been participating in the vertical theme of Osteogenesis Imperfecta with active participation of Dagmar Mekking.