MediPaCe supports Rare Disease Day
Ahead of Rare Disease Day 2023, MediPaCe is showing support by sharing resources and information about rare diseases and patient engagement in this area to help raise awareness. Did you know that there are over 300 million people living with a rare condition? And that there are about 6000-8000 identified rare conditions (Horizon EU, 2022)? Although these overall numbers are big, research and treatment options are very limited due to the low prevalence of each condition (EURORDIS).
With this campaign, we aim to help increase awareness of rare diseases from different perspectives: for example, what it’s like to live with a rare condition, how are families and immediate network impacted, what does patient engagement look like in the rare disease community and how to overcome the unique challenges to patient engagement this community faces.
We believe that health research and the development of medical products should involve patients and rare diseases is no exception even if the numbers of patients might be low. Join the movement and support the RareDiseaseDay.org campaign with us.
Rare diseases affect the families as well as the individuals living with the condition
Rare diseases affect about 300 million people around the world but that’s not including the families and care partners of the individual. In our awareness campaign, we also wanted to shed some light to the experiences of the family members and parents of individuals living with a rare condition. The story we highlighted was Chris’ story and why advocacy matters (from MD Group(.com))
Find out more about experiences of people living with rare conditions through organisations such as:
- EURORDIS – European Organisation for Rare Diseases
- NORD – National Organization for Rare Disorders (US)
- Patient Worthy
#FamilyPerspectives
Work with the patient community to create treatments that address unmet needs
Patient engagement is essential to create the kind of drugs that address patients’ needs but patient engagement is not happening in a systematic way. In rare diseases, this problem is emphasized with smaller patient populations and lower prevalence of the diseases, making it even more difficult to engage patients.
If you need more support, please don’t hesitate to reach out to the MediPaCe team to discuss how we might help you build your patient engagement capabilities.
#PatientEngagement #PatientInvolvement #Collaboration
Overcoming Challenges to Patient Engagement in the Rare Disease Community
We reached out to our network to ask the patient advocates’ perspective to overcoming challenges to patient engagement. The key takeaways are:
- Collaboration does not always need to happen in a traditional 1-to-1 partnership and does not have to be fully funded by the pharmaceutical company.
- There are always people living with rare conditions (and their families and care partners) who are willing to work with pharmaceutical industry in R&D, but not all might speak English.
Read more about the patient advocates’ perspective to overcoming patient engagement challenges from our article where we interviewed Inês Alves from ANDO Portugal and Nick Sireau from AKU Society.
Watch Nick Sireau’s interview in full from our YouTube channel
#PatientEngagementChallenges #IncreaseCollaboration
