Domenica Taruscio

M.D. pathologist, director of the Italian National Centre for Rare Diseases (Italian National Institute of Health); Italian COMP (Committee for Orphan Medicinal Products) Member at EMA (2000-2009); member of the former European Rare Diseases Task Force and EUCERD (European Union Committee of Experts on Rare Diseases); Member of  “Health Research” Advisory Group; scientific coordinator of EUROPLAN (www.europlanproject.eu), EPIRARE (www.epirare.eu) and Rare Bestpractices (www.rarebestpractices.eu) EU projects; Past-President of ICORD (www.icord.se). 

Member on the Interdisciplinary Committee of IRDiRC (www.irdirc.org). Her efforts are directed mainly to tackle rare diseases from science to society.

 Cristina Morciano

Cristina Morciano (MSc) has a background in molecular epidemiology. In 2006 she started her career as researcher at the Istituto Superiore di Sanità (ISS), National Centre for Epidemiology,  Survelliance and Health Promotion, clinical epidemiology unit and in 2007   became a staff member  of the Italian National Guidelines System as national guideline coordinator (http://www.snlg-iss.it/).  

As member of the ISS team participating  in the EC funded project EUPHORIC (www.euphoric.eu) and CoCanCPG (Coordination of Cancer Clinical Practice Guidelines http://www.cocancpg.eu/) she worked on reducing duplication of effort between European guideline developers.

She is now  working at the National Centre for Rare Diseases of ISS focusing on rare disease guideline development and training events organised to support stakeholders in developing and evaluating guidelines for rare disease.

In the RARE-Bestpractices project she acts as WP6 leader (dissemination) and as a member of the coordination team.

 

Paola Laricchiuta

MA, MLIS, researcher at the National Centre for Rare Diseases (CNMR) of the Istituto Superiore di Sanità (ISS). In 2008 Paola joined the ISS, National Centre for Epidemiology, Surveillance and Health Promotion. She served on the Italian National Guideline System (http://www.snlg-iss.it/) and participated in the development process of several guidelines as a coordinator, a member of the writing committee or supporting the activities of the coordination team. Paola has been involved in training initiatives on methods in guideline development, both as a tutor and organizer.

Within the CNMR her work focuses on the development of guidelines for rare diseases and on running courses on development and evaluation of guidelines for rare diseases.

She is involved in the RARE-Bestpractices project as a member of the coordination team and of the editorial board, and as a task leader in work package 6 (dissemination) working on enhancing the dissemination of project results and on establishing interactions with other relevant EU projects.

Linda Agresta

She started her career at the National Centre for Epidemiology, Survelliance and Health Promotion of the Istituto Superiore di Sanità in 2000. She si now working at the National Centre for Rare Disease as a member of the secretariat team.

Giorgio Vincenti

He started his career as a member of the secretariat team at the National Centre for Rare Diseases of the Istituto Superiore di Sanità, in 2003. He is in charge of administrative issues and member of the project management team of RARE-Bestpractices.

Sabina Tonon

Andrea Vittozzi