“Play the Rare Game for the Rare Ones” kicks off in Parma with the first Rugby match to raise awareness on rare diseases
- A project carried out by Zebre Rugby Club in collaboration with Chiesi Global Rare Diseases to support the Make-A-Wish International foundation.
- The first throw of the oval ball took place in Parma but the ball passes will continue until February 28th 2023 for the Global Rare Diseases Day.
- It’s possible to check the digital counter in the website campaign www.playtheraregame.com that keeps score of the number of virtual ball passes: each ball pass represents a donation from Chiesi to Make-A-Wish International foundation.
- To be part of this team and make a contribution you can go on the website www.playtheraregame.com, click on the filter and virtually pass the ball, save the picture and post it on your social profiles using the hashtag #PlaytheRareGame and tagging @chiesiglobalrarediseases.
Parma, December 5th 2022 – In occasion of the International Day of People with Disabilities, in Parma was launched the #PlaytheRareGame campaign carried out by the Parma Rugby Team, Zebre di Parma, in collaboration with Chiesi Global Rare Diseases. The campaign started with an international rugby match between the Italian Rugby Federation team and the Scottish Glasgow Warriors. The game was witnessed by patients and caregivers organizations, clinicians, players and fans. The aim is to use the simple metaphor of the passage of a ball to build the biggest team dedicated to the world of rare diseases.
“Only together we can make a difference for the rare diseases community. The project Play the Rare Game for the Rare Ones was born to promote the values of inclusion, collaboration and cooperation, typical of team sports, as a reminder to not leave anyone behind. As a B Corp oriented in creating shared value, we commit in sustaining the community of the people living with rare diseases and their caregivers with projects and initiatives that aim to reduce the stigma built around having a rare disease, commonly viewed as a diversity element”.
Alessandra Vignoli, Head of Mediterranean Cluster of Chiesi Global Rare Diseases.
The collaboration with the Zebre rugby team developed from the shared intentions and values of inclusion and cooperation, already promoted in occasion of the Rare Disease Day 2021 and 2022 for the campaign “We Wear Stripes”. A project born from the symbol of rare diseases, the zebra, and the stripes that distinguish it.
“When you hear hoofbeats, think horses, not zebras. And when you hear hoofbeats behind you, don’t expect to see a zebra”. That’s the famous quote from Theodore Woodward in the 50s, professor at the University of Maryland School of Medicine in Baltimore, responsible for the common use of the term “Zebra” in the scientific world to identify a rare disease diagnosis. In medicine, zebras represent a symbol used to refer to a rare disease or condition. Doctors were taught that usually the simplest solution is also the correct one and that’s the explanation of the quote “When you hear hoofbeats, think horses, not zebras”. In the whole world there are millions of people affected by rare diseases and often patients’ diagnosis are mistaken or ignored because of the unusual and inexplicable symptoms that they manifest.
“Zebre Parma is a rugby club that’s always been committed to support such initiatives that legitimize our privilege of being professional players. We want to remind everybody that special and unique people do exist and they can’t be left behind”.
Michele Dalai, sole director of Zebre Parma.
“AIAF- Anderson-Fabry National Association encourages such initiatives because sports can offer an essential help for people with rare diseases and they can be a valuable tool for social inclusion. As an association, what we do to hold the community together with common goals, it’s not far from what a sport team does. To do that we need to be supported, we need to be able to count on the joint forces of the families, the doctors, and the institutions. Determination and teamwork are recurrent features in rare diseases patients. And that’s why we share many values with the sport world. Our compliments go to this initiative, that creates a network in an original way and makes the voice of rare diseases patients feel heard even from far away”.
Stefania Tobaldini, president of the AIAF APS Anderson-Fabry Italian Association
“Since 2007, Mitocon ODV plays a fundamental role in the Italian and international world of mitochondrial diseases, supporting research projects, patients of all ages and their caregivers. Mitochondria are the power houses of our cells so when they die, cells lose their strength too. Leber’s hereditary optic neuropathy (LHON) is the most common of all the mitochondrial diseases. People who suffer from this disease usually start losing their central vision from one eye and then from the other, having then to live with just a small percentage of peripheral vision left. But life must go on, and among our patients there are many great examples of people who stayed active: athletes, mothers, fathers, journalists, lawyers, physiotherapists, coaches, musicians. We have the strength to see the joy of living through our hearts and souls. Participating in Play the Rare Game is a great honor for all of us and we will continue to carry the torch of life”
Paula Morandi, Representative of patients with mitochondrial diseases of vision.
“Since many years Make-A-Wish International fulfills the wishes of the children struggling with serious illnesses. We learnt to recognize the power and the value of these wishes. Wishes deliver physical and emotional benefits to the kids living with serious diseases and they do not just help the children, they also have a positive impact on their families and on the whole community”
Elda Ghiretti from Make-A-Wish International.
It’s time to team up. The Play the Rare Game project and the social challenge
The chain of ball passes started from the players – in the Lanfranchi stadium in Parma before the tip-off of the game between Zebre Rugby Club and the Scottish Glasgow Warriors – who surprised the public with a Flash mob. The Flash mob represented the official start of the social challenge on Instagram in which everybody can participate.
Users can use a filter (found here www.playtheraregame.com) that simulates the throw of the oval ball and using the hashtag #PlaytheRareGame and tagging @chiesiglobalrarediseases the digital counting starts.
The chain of virtual ball passes, other than raising awareness on the rare diseases’ impact at global level, helps raising funds destined to Make-A-Wish International to fulfill the wishes of children struggling with serious diseases.
Directions on how to participate
STEP1: go on the website www.playtheraregame.com
STEP2: click on ‘make your pass’ that will redirect you on your Instagram page
STEP3: take a picture or a video using the filter
STEP4: click on the three dots to download the picture or video
STEP5: post the content on your social medias using the hashtag #PlaytheRareGame and tagging @chiesiglobalrarediseases and don’t forget to invite your friends to do the same visiting the initiative’s website.
Together we can raise awareness on rare diseases and the more we are, the more we can shed light on this theme.