Rare Disease Day takes place on the last day of February, often a very rare day. It was chosen specifically by Eurordis, the European organisation promoting the event to celebrate those suffering from rare diseases, their caregivers and the entire community.
This year the day will be celebrated on February 28. The most significant points in our cities will be lit up throughout the evening and night to remind us that we must “shed light on rare diseases” and attract public attention on the problems of those suffering from a rare disease. This is an important opportunity to address equal access to diagnosis, treatment and cures.
We are addressing this issue with eight associations that collaborate with us on Project Factor J, promoted with Janssen Italia:
- Italian Association against Leukaemia, Lymphomas and Myelomas (AIL)
- Italian Pulmonary Hypertension Association (AIPI)
- Piedmont Rheumatic Patients (AMaR)
- National Association for Chronic Intestinal Inflammatory Diseases (AMICI Onlus)
- National Association of Skin Friends (ANAP Onlus)
- Italian Psoriasis – Friends of the Corazza Foundation (APIAFCO)
- HIV-positive Patients Network (NPS Italia Onlus)
- Project Itaca Onlus
In Italy, nearly one million and two hundred thousand individuals suffer from rare diseases and we have currently identified 8000 rare disease at present. Therapy has only been developed for 300 of them.
#Uniamoleforze
