World day of rare diseases, minorities to know
Next 28th, World Rare Disease Day will be celebrated, as it has been for every last day of February for the last ten years.
By definition, " rare diseases " include all those diseases that do not affect more than 0.05% of the population, therefore 5 cases out of 10 thousand.
As for Italy, the cases of rare diseases are around 2 million, including infants and children, and the pathologies affecting them are about 6/8 thousand. The Day has become the most important appointment in the world for rare patients, for their families, for doctors and socio-health and research professionals working in the sector.
Established in 2008 on the initiative of EURORDIS, the European Organization for Rare Disease, it is today a world-class event that sees the participation of more than 80 countries in the world. In Italy, Rare Disease Day is coordinated by UNIAMO, the Italian Federation of Rare Diseases Onlus.
The purpose of the Rare Disease Day
The purpose, in addition to uniting many different pathologies in one day, so many people, doctors and operators and families, is to increase awareness and knowledge about rare diseases and to bring to light the impact that these forms uncomfortable details may have .
It is in fact a broad-spectrum campaign that aims to involve all people: patients together with their families, associations, the medical community, researchers, the pharmaceutical industry and social welfare institutions.
To refer to the events and initiatives that involve all countries worldwide, you can take a look at the Rarediseaseday.org website; while for Italy there is Uniamo.org.
There is also the Facebook page of the current magazine .
Events in Italy on the Day of rare diseases
From congresses to street parties, film screenings, solidarity dinners, running races, concerts, theatrical performances to visits to research laboratories; from information courses to photo exhibitions, stands, banquets and information points in the city; from flash mob to drawing competitions for children to dancing evenings: there are many ways to explain the topic of rare diseases to those who do not know it, from north to south of Italy.
Here are just a few appointments: on the Uniamo.org website you can read the complete list of appointments on the dedicated page of the program.
> Rome 09 and 10/02/2018 RD Action National Conference at the Bambino Gesù Pediatric Hospital, a two-day workshop dedicated to three substantial themes for the community of rare: European Reference Networks, Therapeutic Care Diagnostic Plans and Services social.
> Also in Rome, on 28/02/2018 there will be a Flash Mob "ONE DAY FOR RARE DISEASES" at the "Louis Pasteur" High School, at: 11.45 / 12.15
> PalermoToday announces awareness meetings and the conference at the University entitled "Rare Diseases need Research - Rare patients need you"
> How Eurordis communicates is the initiative "Show that you are with rare patients on social media" : you can participate in the interactive campaign on social media #ShowYourRare: paint your face and share your selfie on social media showing your support to the rare disease community! You can also take inspiration from the EURORDIS team
> Make, tell and tell yourself: If you are planning an event for Rare Disease Day 2018 you can share it on Rarediseaseday.org so that people can participate. On the site indicated you can also tell your own story.
