Fondazione Idis-Città della Scienza participates in the XIII edition of the Rare Disease Day coordinated by EURORDIS (European Organization for Rare Diseases) and promoted by UNIAMO F.I.M.R. Onlus hosting Saturday 29 February, from 10 to 1 pm in the Sol Lewitt room of the Fablab Dream a study day entitled “The woman is rare”.
The key theme of this year’s edition is Equity as access to equal opportunities to enhance the potential of people with a rare disease.
People with a rare disease, which are few or very few for each disease, are more than 300 million worldwide and make up the third largest nation.
Chronic rare diseases require families to adapt to an experience that is almost impossible to share, to considerable difficulties in obtaining a rapid and reliable diagnosis, to the weight of daily care and to the high costs due to the lack of reimbursed common treatments. Often it is precisely on the woman that a multiplicity of tensions falls, taking charge, care, support, enhancement of the potential, but not only: being faced with a diagnosis that involves personal physical suffering to be treated, discovering that she is the bearer of a genetic mutation and feeling responsible for your child’s illness is a very tough burden to bear.
A day to talk with doctors, women scientists and operators in the sector about the complexity of the care management of the rare neurological patient, the importance of early diagnosis, advanced treatments and treatments for social development tending to promote equality and equity by strengthening the concept of “Patient centrality”, we will talk about the caregivers trying to break the isolation in which family members who care for their loved ones are too often found.
Anyone wishing to show their support in the international awareness campaign for people with rare diseases can take a phto and publish it on their profile using the hashtag #GiornatadelleMalattieRare.
