ADVOCACY

Covid-19 Helpline in Orphanet Journal

28/09/2020By

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.

Group of people sitting around a u-shaped conference table. A person is standing up with a microphone talking to the group.
ERN BOND coordinator Luca Sangiorgi meeting with the international patient community of OI at the pre conference seminar at OIOslo2017.

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
  • trauma
  • pregnancy
  • children and elderly people
  • the role of patient associations

Collaboration between ERN BOND & ASITOI

Leonardo Panzeri, chair of 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.

1. Who had the idea of the Covid19 Helpline? 

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.

2. How has Covid affected ASITOI and the OI-community in Italy? 
COVID-19 affected the ASITOI community both negatively and positively. From a positive point of view, it gave us the opportunity to work from a distance with new tools. From a negative perspective it eliminated the physical contact between us. It has definitely increased our feeling of fear and attention. But we didn’t let it stop us, and we reacted with new ideas. We renewed ourselves to meet new needs.
3. Would you recommend a similar Helpline for other countries? 
Absolutely, yes. A Helpline is important, not only during lockdown, but it will be useful forever. We are testing it now and we are evaluating the necessary efforts and the feasibility for a long period.
4. What role can patient organizations play in developing projects & guidelines like this article? 

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…

5. Other things you would like to add? 
The scientific research community and the patient organizations should work and cooperate more together in a global perspective without borders and without barriers.
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