Lovely to meet new Peter trustee Wendy at #IDMC14 ! The UK #MyotonicDystrophy patient registry supported recruitment to their recent survey; it's great to see the results of this important work being presented to the global research community 🌍

Our friends at Peter have produced a 'Could it be...' poster to raise awareness of #MyotonicDystrophy symptoms and support accurate diagnosis💚 Please share far and wide! #MyotonicDystrophy Awareness

Me and Emma-Jayne from Peter with our #MyotonicDystrophy Registry Participation poster 👐 View it online here: bit.ly/RegParticipati…

One day of the year when we feel part of a VERY large community! #RAREDISEASEDAY

Today is International Myotonic Dystrophy Awareness day. We are lighting up green - Buildings, Bridges and Monuments - all over the globe, working together to make a difference for Myotonic Dystrophy on the September 15th! Peter #CharityTrustee #MyotonicDystrophy

Peter

Great start to IDMC-14 in Nijmegen with the Euro-DyMA Pharma day!

Always a pleasure to spend time with the Peter founders Emma-Jayne and Pete 💚🦁 You're doing a fantastic job as TREAT-NMD Patient Representatives for the #MyotonicDystrophy community! #DM1 #DM2

Help MD herkennen met deze lijst

Helen Walker Peter TREAT-NMD Good

In support of International Myotonic Dystrophy Awareness Day, we will light the building green this evening. 💚

Peter
#TheDeepHull #Hull #Aquarium #MyotonicDystrophyAwareness Day #MyotonicDystrophyAwareness #CureDM

Spent the weekend with amazing people! As a trustee for Peter it was such a privilege to see the courageous adventures & friendships made ⭐️ Here’s my own Little B (who has muscular dystrophy) at the top of a climbing wall! Calvert Lakes Best weekend ever 🫶

Another 10K with the big lad to get ready for the Kiltwalk. Hope the weather is as perfect for walking on the big day as it was today. Very grateful to our lovely sponsors. [Link in bio] Peter #charity #MyotonicDystrophy

Peter See you in a bit!

The Global Alliance for #MyotonicDystrophy Awareness has over 57 organisations focused on advancing the understanding of and care for this rare genetic disorder around the globe.
#RareDisease #RareDisease Awareness #RareDisease Day2024 #RareDisease Day #RDD 2024   #RDD
Peter

Today we honor International Myotonic Dystrophy (DM) Family Day & show our continued support for people living with #DM1 & their families. Organized by Peter, this event brings families together to support each other & raise awareness. Learn more: congenitalmyotonicdystrophy.org/contents/en-uk…

On #RAREDISEASEDAY we recognise that lived knowledge of a disease is critical to improving care & developing treatments.
If you, or someone in your family, has experience of living with DM, please tell us about it in our NEW survey. Thank you!
surveymonkey.com/r/DM-in-the-UK…

Well done Emma-Jayne - much deserved Peter 👏🏻.

We’re excited to support and celebrate the Peter Family event - a weekend that offers families living with #DM peer-support, fun, and information. To learn more visit: facebook.com/CureDMCharity/