PARTICIPATE IN THE PROJECT LET'S TURN THE LIGHTS ON RARE DISEASES
We ask you to join the awareness campaign "Let's turn the lights on rare diseases", promoted by Uniamo Italian Federation of Rare Diseases, italian national coordinator of the Day. The initiative will take place on February 28th and will be picked up by the local and national press as well as on the Federation’s official social networks.
In particular, we ask you to illuminate a monument in your city, in the colors of the day (blue, pink, purple, green or one of your choice). GFB is organizing the event in some Italian cities, participating is simple, we give you a form to fill out and you have to deliver it to your municipality.
To participate: This email address is being protected from spambots. You need JavaScript enabled to view it. or +39 349 3374060.
GFB SUBSCRIPTIONS:
LOMBARDY:
- CAIOLO SO Italy, city hall
- CASTIONE ANDEVENNO SO Italy, Leone Trabucchi auditorium - San Rocco
- CASTIONE ANDEVENNO SO Italy, car dealership Motori Sondrio srl - via Vanoni 57
- PIURO SO Italy, Acquafraggia Waterfalls
- PONTE IN VALTELLINA SO Italy, city hall
- PONTE IN VALTELLINA SO Italy, Learning Bridge Cultural Centre
- ROGOLO SO Italy, city hall
- SONDRIO SO Italy, car dealership Motori Sondrio srl - via Trento 20
- TALAMONA SO Italy, city hall
- VALDISOTTO SO Italy, "Oga" Shrine - Beata Vergine del Caravaggio
- VILLA DI TIRANO SO Italy, Stone Bridge
- AZZATE VA Italy, city hall
- BESOZZO VA Italy, war memorial "Il Faro"
- GAVIRATE VA Italy, city hall
VENETO:
- BREGANZE VI Italy, city hall
- CASTELGOMBERTO VI Italy, city hall
- CHIAMPO VI Italy, Corinthian Column in Piazza Zanella
- MALO VI Italy, San Bernardino Church
- SCHIO VI Italy, Statue of the Weaver in Piazza Rossi
- SCHIO VI Italy, Firm Ecor S.p.A.
- THIENE VI Italy, fountain in Piazza Chilesotti
- ZANÈ VI Italy, Firm UNIVER 2000 srl
- ZANÈ VI Italy, P.le Aldo Moro social-cultural center
TRENTINO-SOUTH TYROL:
- CANAZEI TN Italy, city hall
EMILIA-ROMAGNA:
1. MODENA MO Italy, "Del Graziosi" Fountain in Largo Garibaldi
LAZIO:
- ALBANO LAZIALE RM Italy, war memorial "Cecchina"
- MARANO EQUO RM Italy, "Della Pietà" Church
LOOK AT ALL THE MONUMENTS IN ITALY
LOOK AT THE PHOTOGRAPHS OF THE CAMPAIGN LET'S TURN THE LIGHTS ON RARE DISEASES
TAKE PART IN THE PROJECT adopt a rare disease day tulip
Do you want to receive a tulip bulb for rare disease day? Some European associations, including GFB, are sending them to their patients/supporters. Participation is free for everyone. Then you will have to undertake to take care of it and when it is in bloom you will send us your photograph with the tulip.
Send your request to: This email address is being protected from spambots. You need JavaScript enabled to view it. or +39 333 7965652.
PARTICIPATE IN OTHER NATIONAL INITIATIVES...
UNIAMO SOCIAL CAMPAIGN
Join the #UNIAMOleforze campaign and receive the official t-shirt of Rare Disease Day! Wear it and post a photo on your social channels tagging @uniamomalattierare.
Starting from January 18th you can get your t-shirt by requesting it on the designated page on Uniamo website Giornata delle Malattie Rare 2021 – Uniamo FIMR Onlus . For any further information don’t hesitate to contact us: This email address is being protected from spambots. You need JavaScript enabled to view it. or +39 349 3374060.
You can also show your support on social media using the campaign graphic materials for Facebook and Instagram which you can download from the Uniamo website page above.
Don’t forget to use the campaign official hashtags: #rarediseaseday #UNIAMOleforze and tag @uniamomalattierare and @eurordis.
UNIAMO PRESS CONFERENCE: LAUNCH OF THE SPOT rare disease day
The following 29th January at 12.00am a press conference will be held on Zoom for the launch of the spot created by UNIAMO FIMR and directed by Maurizio Rigatti for Rare Disease Day. You can join this event by registering at the following link: Webinar Registration
UNIAMO SPOT RARE DISEASE DAY 2021 IS NOW ONLINE!
Watch the spot here #UNIAMOleforze - Spot Giornata Malattie Rare 2021 - UNIAMO - YouTube and share it using the hashtags #UNIAMOleforze #RareDiseaseDay and tag @uniamomalattierare. Uniamo spot, starring Italian actress Diana del Bufalo and directed by Maurizio Rigatti, will be broadcasted soon on Mediaset and Sky networks.
UNIAMO OFFICIAL PAGE FOR RARE DISEASE DAY IS NOW ONLINE!
You will find all the information about Rare Disease Day, you will be able to receive the official t-shirt and become part of UNIAMO SOCIAL WALL: a space where we can finally be close to one another, UNITED not to leave anyone behind. Discover the page UNIAMO LE FORZE – Uniamo FIMR Onlus and upload and share your photo using the hashtags #UNIAMOleforze #RareDiseaseDay and tag @uniamomalattierare.
RARE DISEASE DAY 2021 MAIN EVENT
On Monday, 22nd February 2021 at 10.00am Rare Disease Day 2021 Main Event will be held on Zoom. The event will be coordinated by UNIAMO FIMR onlus, the Italian Ministry of Health and by the Rare Dieseases National Center of Istituto Superiore di Sanità. Join this event by registering here: Webinar Registration - Zoom
CLOSING PRESS CONFERENCE "RARE DISEASE DAY: UNIAMO LE FORZE"
On Thursday, 4th March 2021 at 10.00pm UNIAMO FIMR closing press conference for Rare Disease Day 2021 will be held on Zoom. Join this event by registering here: Webinar Registration - Zoom
PARTICIPATE IN THE EUROPEAN AND GLOBAL INITIATIVES...
GLOBAL CAMPAIGN “MEET OUR HEROES!”
6 continents, 6 portraits, 6 heroes, 6 lives. Rare Disease Day shines a light on the global and diverse community of over 300 million people - men, women and children, adolescents, young-adults, adults, seniors.
Here are the stories that will feature in this year's Rare Disease Day global campaign: each of these 6 stories present individuals living with a different rare disease, each of them facing similar challenges. Find out more about them on Rare Disease Day ® 2021 at the page Rare Disease Day ® 2021 - News
AND DO YOU WANT TO TELL YOUR STORY?
You can also join Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your personal experience and also submit photos or a video testimonial by visiting the designated page Rare Disease Day ® 2021 - Tell your story!
EURORDIS BLACK PEARL AWARDS 2021 – 10th EDITION
BLACK PEARL AWARDS is the annual global event held by EURORDIS to recognise the outstanding achievements and exceptional work of people making a difference for the rare disease community.
The 10th edition of the EURORDIS Black Pearl Awards will take place fully online on 24th February 2021, from 17:00. BLACK PEARL AWARDS is a free event open to everybody from all over the world. Registration has already opened. For any further information we advise you refer to the event’s official website EURORDIS Black Pearl Awards Rare Disease or feel free to contact us: This email address is being protected from spambots. You need JavaScript enabled to view it. or +39 349 3374060.
With the Patronage of
