Cinzia Pilo

Cinzia Pilo is a professional currently serving as the Chief of Staff at Regione Autonoma della Sardegna (Autonomous Region of Sardinia).1 Her career encompasses various roles and responsibilities, showcasing her diverse experience and commitment to both professional and voluntary work.

Professional Experience

Cinzia's primary role is with the Regione Autonoma della Sardegna, where she holds the position of Chief of Staff.1 This role likely involves managing high-level operations and coordinating activities within the regional government of Sardinia.

Volunteer Work

Alongside her professional career, Cinzia is deeply involved in volunteer work, particularly in the field of rare diseases:

• DEBRA Italia: She has been serving as the President of DEBRA Italia since May 2011, a position she has held for over 13 years.1
• DEBRA International: Cinzia also holds a position as President with DEBRA International.1

These roles with DEBRA organizations indicate her commitment to supporting individuals with Epidermolysis Bullosa (EB), a group of rare genetic conditions that cause fragile skin.

Advocacy and Public Speaking

Cinzia is actively involved in patient advocacy, particularly for those affected by Epidermolysis Bullosa. In March 2024, she spoke to the Chiesi Global Rare Diseases team about the challenges faced by young patients with EB.3 This engagement demonstrates her dedication to raising awareness and promoting understanding of rare diseases.

Social Media Presence

Cinzia maintains an active presence on LinkedIn, where she shares content related to her work in rare disease advocacy, using hashtags such as #butterflychildren, #bambinifarfalla, and #epidermolysisbollosa.23 She also posts about social responsibility and societal issues.45

Cinzia Pilo's career and volunteer work reflect a strong commitment to public service, both in her professional capacity with the Sardinian government and in her advocacy for individuals with rare diseases.