This year we are asking the rare disease community and their loved ones across Europe to thank the people that have helped them to stay strong throughout their rare disease journey.
In 2022, we are celebrating solidarity within the rare disease community by sharing experiences and raising awareness of the needs of others. Through this campaign we aim to celebrate each other’s strength and support and say thanks to those who’ve helped us.
We want to hear about your heroes, the people who support you every day, and the small acts of kindness that keep you going.
Check out the posts below from rare disease patients and their family and friends all over Europe and get involved yourself by using the hashtag #MyRareLife and sharing your hero today!
Our heroes
Check out the posts below from members of the rare disease community across Europe who are celebrating solidarity by thanking those that have supported them.
You can get involved too! Share who your hero is – all you have to do is use the hashtag #MyRareLife and you might even spot your own post…
Beacon for Rare Diseases
Share your lived experiences using the hashtag #MyRareLife! BioMarin Pharmaceutical Inc.: My Rare Life wants to hear from as many rare disease patients as possible about their journey and those who have inspired/helped them to stay strong along the way💪 Learn more now! https://myrarelife.eu
Tove Vindgaard Schmidt
I guess you're always a bit special... - but I'm also part of the #olderdiagnoses - as we're not that many with PKU in Denmark 😉❤️ Today is #RareDiseaseDay 2022! Thank you to the campaign ambassadors who featured in this year’s #MyRareLife video and huge thank you for sharing all your experiences throughout the month. You can get involved too! Use the #MyRareLife to tell us about your heroes, the people who support you, and the small acts of kindness that keep you going. 👉
Beacon for Rare Diseases
Share your lived experiences using the hashtag #MyRareLife! BioMarin Pharmaceutical Inc.: My Rare Life wants to hear from as many #RareDisease patients as possible about their journey and those who have inspired/helped them to stay strong along the way💪 Learn more now! https://myrarelife.eu
Kirill Kulyaev
Sergey from St Petersburg joins the International Day for Rare Diseases. I am Sergey Mikhailovich Matyashin, I have PNH. I stand in solidarity with Rare Disease Day. I am grateful to my parents and relatives and friends! I would like to express my gratitude to the doctors, the Circle of Kindness Foundation, and the Rare House. #ДомРедких #MyRareLife #ДеньРедких #НаЦеЛеныЖить #МояРедкаяЖизнь #РедкиеЗаболевания #ДругаяЖизнь #ПНГ #ПароксизмальнаяНочнаяГемоглобинурия
Niemann-Pick UK
Back in 2019 (doesn't time fly?!) we released our short film Go Make Memories, directed by Carl Mason, to help tell the story of those affected by Niemann-Pick disease type C...an experience which in many ways is echoed by a wide range of people in the rare disease space. We try to bring our community into everything we do as it is their stories we are telling, both today and indeed every single day! ❤️ You can watch Go Make Memories at the link below: https://www.youtube.com/watch?v=H_y4jBUPm80 Make sure you get involved with Biomarin's rare disease day campaign this year, by posting a picture with the hashtag #MyRareLife to help shine a light on rare diseases. Follow this link for some inspiration from wonderful participants across the world: https://myrarelife.eu/ #MyRareLife #GoMakeMemories #ShortFilm #Community #NiemannPickUK #NPUK
Jay Gardner
⭐️Today is Rare Disease Day 2022! ⭐️ It’s been a pleasure to share my story once more, thanks to BioMarin and the My Rare Life Team! 💙 ❗️You can get involved too! By using the #MyRareLife to tell us about your heroes, the people who support you, and the small acts of kindness that keep you going. 👉🏻 wwww.myrarelife.eu 👈🏻
ya_ponka_
28 February. World Rare Disease Day. Ours is #phenylketonuria. ❤️ Thank you dear husband @silvera_aminov_dubrov for always being there for us, for your support and love, it's corny, of course, I will say it now, but behind you, like a stone wall😆 we are together, we will cope with all difficulties and everything will be fine. Baby didn't want to paint her palm😅 #ладошка_фку #фку #pku #myrarelife
lifebytheorchard
RARE DISEASE DAY 22 “At first I knew he was unique, I just didn’t know he was rare. Whatever the case I knew he was perfect!” This was Ethan at just a couple of days old, back when I was blissfully unaware that anything was wrong. I had experienced a very difficult pregnancy and had noticed a few little minor things wrong at this point, but nothing to worry me really. He was here, he was healthy and he was perfect. Life took a different path than we had expected, or could ever have imagined, but the result is our beautiful, brave, incredibly resilient and perfectly RARE little boy. Ethan suffers from an ‘Ultra Rare’ disease called Mucopolysaccharidosis type 6, MPS6 for short, also known as Maroteaux-Lamy Syndrome. Today we celebrate Rare Disease Day 2022 across the globe and so today we celebrate Ethan and his incredible strength in his fight against this life limiting disease along with all the other amazing rare warriors out there. Please join us in raising awareness for Ethan and all who have no choice but to be brave, by sharing this post, telling someone about his story or sharing the rare disease card. Share that you care 💙🥰💙 #hope4ethan #ethansmps #curempsforethan #ethansfight #ethansjourney #ethansarmy #mps #raredisease #rarediseaseday #rarediseaseawareness #rarediseaseday2022 #myrarelife #mylife #myfamily #myson #mysonismyworld #myboy #mummysboy #mumlife #mumsofinstagram #mummybloggeruk #embracelife #livefornow #cherishlife #cherisheverymoment #brave #strong #warrior #braveboy
Myrarelife.eu
The My Rare Life campaign is funded and organised by BioMarin
Date of prep: January 2022 Job code: EU-MDRL-00086