Covid-19 Helpline in Orphanet Journal
Patient involvement in ERN BOND
Patient involvement has been an important principle in the European Reference Network for Rare Bone Disorders (ERN BOND) all the way from the start. Patient representatives are included in both the steering committee and the working groups of the network. OIFE and other patient organizations are consulted when further advice from patient organizations is needed. Together with two Italian patient organizations, ERN BOND experts wrote an article called “COVID-19 Helpline for Rare Bone Diseases”. It has now been published in Orphanet Journal of Rare Diseases.
The Covid19 Helpline of ERN BOND
The article illustrates the successful experience from the Covid19 Helpline. The initiative was launched in Italy and the purpose was to provide high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals.
Highlighted topics (connected to Covid19 & rare bone diseases) in the article includes:
- general recommendations
- pulmonary complications
- drug treatment
- children and elderly people
- the role of patient associations
Collaboration between ERN BOND & ASITOI
One of the co-authors of the article is chair of the Italian OI-organization ASITOI, mr. Leonardo Panzeri. We decided to ask him some questions on how the collaboration between Associazione Italiana Osteogenesi Imperfetta Onlus (ASITOI) and ERN BOND related to the Helpline came about.
The Helpline initiative was born during a phone call between Dr. Luca Sangiorgi (ERN BOND coordinator) and myself. We decided to set up a COVID-19 dedicated 24/7 telephone line to provide high-quality information to patients and healthcare professionals. We were discussing how to take care of possible COVID-19 positive OIers.
I think that patient organizations can play an important role: first of all to translate the not always easy to understand medical language, second to know how to deal with the academic and healthcare world, to explain our experiences as patients and last but not least to find a doctor who can listen…