ERN BOND coordination team and Italian rare bone diseases experts created the “COVID-19 Helpline for Rare Bone Diseases”, in collaboration with Italian Patient Associations. The helpline aimed at providing high-quality information and expertise on rare bone diseases remotely to patients and healthcare professionals.
The main topics highlighted are general recommendations, pulmonary complications, drug treatment, trauma, pregnancy, children and elderly people, and patient associations role. The successful experience of the “COVID-19 Helpline for Rare Bone Diseases” launched in Italy could serve as a primer of gold-standard remote care for rare bone diseases for the other European countries and globally.

Experts who worked together to grow this project:

  • Evelise Brizola, Bologna
  • Giovanni Adami, Verona
  • Giampiero I. Baroncelli, Pisa,
  • Maria Francesca Bedeschi, Milano,
  • Priscilla Berardi, Italian Osteogenesis Imperfecta Association (As.It.O.I)
  • Silvio Boero, Genova
  • Maria Luisa Brandi, Firenze
  • Lorena Casareto, Bologna
  • Elio Castagnola, Genova
  • Paolo Fraschini, Milano
  • Davide Gatti, Verona
  • Sandro Giannini, Padova
  • Michaela V. Gonfiantini, Roma
  • Vittorio Landoni, Lecco
  • Armando Magrelli, European Medicines Agency
  • Giovanna Mantovani, Milano
  • Maria Beatrice Michelis, Genova
  • Luigi A. Nasto, Genova
  • Leonardo Panzeri, Italian Osteogenesis Imperfecta Association (As.It.O.I)
  • Elena Pianigiani, Bologna
  • Annalisa Scopinaro, Uniamo Federazione Italiana Malattie Rare (UNIAMO FIMR)
  • Laura Trespidi, Milano
  • Andrea Vianello, Padova
  • Giuseppe Zampino, Roma
  • Luca Sangiorgi, Bologna
Read the full article on Orphanet Journal on Rare Diseases.