Carla first joined the Italian Tuberous Sclerosis Complex Association in 2003. A series of events in 2009 inspired her  to dedicate more of her to time helping those affected with Tuberous Sclerosis Complex (TSC). Carla initially took on the role of networking for the association between the different TSC communities around the world and getting to know their key clinicians. She is a founding member of the European Tuberous Sclerosis Complex Association (E-TSC) which was reestablished in Naples in August 2012. Over the years she has aimed to develop her skill portfolio to ensure those she represents are provided with first class care, dignity and respect in treatment.

E-TSC projects:

• Co-Creator DEA (Disseminating Expertise & Achievements in TSC) Pit Stop Projects:
• Co-Creator TSConnect (online case study discussions exclusively for TSC health care Professionals)

Comments:

“I believe that total patient experience, in all of their interactions with health care authorities is paramount. My way of thinking is therefore: how patients feel about their relationship with those involved in health programmes is as important as the actual solutions and treatments that are mutually agreed and then put in place for them. My aim is to ensure that we, as an association, promote interest in our rare disease and therefore in further research, thus engaging more specialised physicians. The role of patient organisations in empowering families and physicians to ensure optimum care for people with TSC is still a long way off. This coincides with continuing to search for a cure. I take pleasure in the fact that our associations are recognising how important their efforts are for getting things done in most areas of management of this rare disease has progressed.”

Further information:

“My second son Jake was born in 1997 and was diagnosed in utero with Tuberous Sclerosis Complex 2. Since his birth I continue to battle for dignity and respect in health care, increased awareness of TSC within the community, research, patient empowerment and equal opportunities for people with this rare disease.”