Rarity on Wheels - RoW

28/02/2023

It's rare disease day!

Time for Africa and Europe to mark 2023!

TV broadcasts, radio podcasts, public transport visuals… Through various means, the community is sharing our call for equity everywhere! Are you also ready to share your colours 💙💚💜?

If you are getting involved, let us know in the comments 👇👇👇 or tag us in your posts 👀

👉 https://www.rarediseaseday.org/category/events/

ALAN - Maladies Rares Luxembourg
ALIBER
NORBS - Nacionalna organizacija za retke bolesti Srbije
Alliance Maladies Rares
Allianz Chronischer Seltener Erkrankungen (ACHSE) e.V.
Aux Pas Du Coeur
Vivo bordy part
childyouthcarezim
Cyprus Alliance for Rare Disorders
Federación Española de Enfermedades Raras
Genetic Alliance UK
Harvinaisten sairauksien ja vammojen organisaatio HARSO ry
Latvijas Reto slimību alianse
The National Alliance for Rare Diseases Support - Malta
Nacionalna organizacija za rijetke bolesti Crne Gore
Savez za rijetke bolesti Republike Srpske
Громадська спілка"Орфанні захворювання України"
Handikappede Barns Foreldreforening
Pro Rare Austria
ProRaris
Radiorg
ČAVO - Česká asociace pro vzácná onemocnění
sjaeldnediagnoser
Rare Disease Ghana Initiative
Ritka és Veleszületett Rendellenességgel élők Országos Szövetsége
Rare Diseases International
Rare Diseases Ireland
Shoqata Peja
Rare Diseases South Africa NPO 120-991
Sällsynta diagnoser/Rare diseases Sweden
Rare Disease UK
Rare Disorders Kenya
Rare Disease Day
Slovenská aliancia zriedkavých chorôb (Aliancia ZCH)
Uniamo Federazione Italiana Malattie Rare onlus
95, Ελληνική Συμμαχία για τους Σπάνιους Ασθενείς

02/02/2023

🎉 Today marks the first day of Rare Disease Awareness Month 2023!

📣 Join us this month to raise awareness for the 300 million people living with a rare disease worldwide!

⚖️ By coming together to advocate for change, we can achieve equitable social opportunity, healthcare, and access to diagnosis for people living with a rare disease.

👉 Find out how you can get involved: https://cutt.ly/w9tI5Pb

09/11/2022

07/11/2022

04/11/2022

Final multiplier event in Italy!



👇🏻

18/10/2022

Living with a rare disease in Italy 🧬

Thanks Un Filo Per la Vita Onlus for sharing with all of us this beautiful experience!

14/10/2022

📆 Manca poco all'evento finale RoW organizzato da Un Filo Per la Vita Onlus il prossimo 7 Novembre a Roma presso l’Ospedale pediatrico “Bambino Gesù”.

Grazie ad Uniamo Federazione Italiana Malattie Rare onlus per la condivisione dell'evento finale e delle Raccomandazioni politiche prodotte ion collaborazione con Csen Perugia Projekt Świętokrzyskie Escuela Ciclista Santi Perez

👉 https://uniamo.org/evento/row/

Il 7 novembre presso l’ospedale pediatrico “Bambino Gesù” di Roma, si terrà l’evento conclusivo di Rarity on Wheels.

07/10/2022

📌 The "Rarity of wheels Policy Recommendations" document created by Un Filo Per la Vita Onlus Csen Perugia Projekt Świętokrzyskie Escuela Ciclista Santi Escuela Ciclista Santi Perez
is available on the project webpage in Italian, Spanish and Polish! 🧬🚴🏼

🇮🇹https://unfiloperlavita.it/wp-content/uploads/2022/10/RoW_policy-recommendations_IT.pdf

🇪🇸https://unfiloperlavita.it/wp-content/uploads/2022/09/RoW_policy-recommendations_ES.pdf

🇵🇱https://unfiloperlavita.it/wp-content/uploads/2022/09/RoW_policy-recommendations_PL.pdf

13/09/2022

📌 The "Rarity of wheels Policy Recommendations" document is available on the project webpage!

👉https://unfiloperlavita.it/wp-content/uploads/2022/09/RoW_policy-recommendations-1.pdf

Being the last output of the RoW project, the document focuses on the work done by the Consortium in the project’s lifespan by Un Filo Per la Vita Onlus Csen Perugia Projekt Świętokrzyskie Escuela Ciclista Santi Perez 🧬🚴🏼
Based on initial research findings and the evaluation of implementation activities (awareness raising campaigns), the document aims at suggesting clear policy objectives aimed to encourage policy makers to take action to support people affected by rare diseases and to support the participation in sports as well as to get the recognition of RDs as disabilities included in major sports competitions such as the Paralympics.

08/09/2022

🧐 Curious about the 12 raising awareness campaigns on sport and rare diseases organized in Italy, Span and Poland by Un Filo Per la Vita Onlus Csen Perugia Projekt Świętokrzyskie Escuela Ciclista Santi Perez ?🧬🚴🏼

The RoW Booklet is now online and gives an overview of the awareness raising campaigns implemented in our partner countries from December 2021 to August 2022.
👉 https://unfiloperlavita.it/risultati/

29/08/2022

Our Italian team organized the third raising awareness campaign during the Sila Epic MTB Marathon! 🧬🚴🏼