Check out the #Roundup of our #RareDiseaseDay campaign here:
https://medipace.com/2023/02/22/rare-disease-day-2023/
Topics include:
- #FamilyPerspectives & #PatientStories
- #PatientEngagement
- #OvercomingChallenges
Special thanks to our network, colleagues and Ines and Nick for sharing your thoughts!
Are you interested in reading more about the #experiences of people living with #RareConditions?
Check these:
⭐ @EURORDIS https://www.eurordis.org/rare-disease-personal-stories/
⭐ @PatientWorthy https://patientworthy.com
#FamilyPerspectives #RareDiseaseDay #PatientEngagement #PatientInvolvement #MediPaCe
Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience for patients and families. Here is a collection of stories and videos from people who have generously shared their experiences of living with a rare disease. Would you like to share you own experience? Contact us for more information
Why Advocacy Matters: Chris’ story
A rare condition doesn’t only affect the person living with it, but the family too. We found Chris’ story so insightful. Thanks to Chris and MD Group for sharing.
What’s your experience as a family member of someone living with a rare condition?
https://mdgroup.com/blog/why-patient-advocacy-matters-chriss-story/
#FamilyPerspectives #RareDiseaseDay #PatientEngagement #PatientInvolvement #MediPaCe
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