It was great to welcome Michelle to the PACTO offices yesterday to talk about the work we've been doing in the last few months, how we're connecting with the community, and how we can continue working together moving forward! 🗣🤝

Get paid for your opinion via
Rare Patient Voice
#Patients and Caregiversof any #Disability#disease, or
#condition via surveys and interviews to improve #Medical products and
services.
#RareDisease #Ataxia -- #Zebra
Sign Up Today!
rarepatientvoice.com/ataxiaandme/

We’re excited to showcase Prime’s posters at the 20th Annual Meeting of ISMPP! Check out our posters in the poster hall. Want to learn more? View these posters in detail here – reach.primeglobalpeople.com/ismppus2024 #ISMPPAnnual2024 #PrimeAtISMPP #MedicalPublications #Posters

#Nominate us for a #Financial #Award towards our awareness projects via
Benefact Group

movementforgood.com/index.php?cn=1…
#Atacsia #Ataxia #Charity 1184030

Michelle from our #Wales team visited PACTO to talk about their amazing work in #Pembrokeshire 🚐

They're engaging with youth and integrating into local events to tackle transport challenges. Inspiring discussions with their team and board showed how we can grow together.

Are you AWARE?
Dont forget #Ataxia is NOT a Foreign #Taxi ( #cab )

to learn more, check out
ataxia-and-me.org

#FindYourPower to support us at
localgiving.org/appeal/Ataxia_…

A quantitative and qualitative analysis of patient group narratives suggests common biopsychosocial red flags of #undiagnosed #RareDisease
link.springer.com/article/10.118…
via Medics4RareDiseases Dr Sondra Butterworth. Community Psychologist University of Salford

#Nominate
(via Benefact Group)
us for a #Financial #Award towards our awareness projects

movementforgood.com/index.php?cn=1…
(our details have been filled in, for your convenience)
#Atacsia #Ataxia #Charity 1184030

People living with #RareDisease must often manage their own care. The burden of care coordination can create pressures across the lives of patients, their families and carers.

Help us #ElevateCareForRare #IAmNumber17

Check out

iamnumber17.org.uk

cc
Wales Gene Park

the #patient is the expert in their own condition

patient involvement in #Research is paramount
#ISMPPAnnual2024

You can’t collect meaningful patient experience data without patient engagement #ISMPPAnnual2024 Made WITH Patients Envision the Patient

The power of language… as medical communication professionals, we need to ensure we use language that promotes dignity, mutual respect, and humanity. #ISMPPAnnual2024

It's been an amazing first day of the 20th Annual Meeting - reuniting with peers and meeting first-time attendees! More great programming is scheduled for Day 2!

#ISMPPAnnual2024 #MedComms #MedPubs

KAPOW!! Superhero Tri is approaching fast. does your charity have your community of Superheroes at the ready? Join our ever-growing Charity Friends to display what’s possible given the right opportunity! #CharityTuesday [email protected]

The #Patient is the Expert in their own condition
#RareDisease
#ISMPPAnnual2024

Take note ISMPP community - patients aren’t waiting for others… they’re taking the lead! Great to see this example of how patient advocates are joining forces to define how AI can and should influence health care and research #ISMPPAnnual2024

The #Patient is the Expert in their own condition
#ISMPPAnnual2024

You can raise donations for us in one easy click with the Give as you Live 💙❤️💚 #Donation Reminder.

Download and raise > giveasyoulive.com/join/atacsiaaf…

Join expert local guides on a FREE two hour cruise around beautiful #Skomer and #Skokholm . This opportunity is designed for disabled people and carers/ companions. It is a chance to enjoy the islands’ spectacular seabirds and geology. welshwildlife.org/accessible-boa…

Following the ABPI drop-in last week, thanks Russell George MS for laying record.senedd.wales/StatementOfOpi…

MSs - Need more info before signing?

ymyh.org
abpischools.org.uk

Sign the Medicines Pledge: ymyh.org/your-medicines… and encourage others to do the same.