Rare Disease Day
Since its creation in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse – but united in purpose.
Observed every year on 28 February (or 29 in leap years) – the rarest day of the year – Rare Disease Day was set up and is coordinated by EURORDIS and 65+ national alliance patient organisation partners.
To the EHC community, Rare Disease Day means bringing attention to those rare among rare, broadening focus and including in the conversation those who have not always been included, those who are still struggling to receive accurate or any diagnosis at all.
Rare Disease Day 2024
To celebrate Rare Disease Day on 29 February 2024, the EHC ERIN Committee held a Rare Bleeding Disorder Webinar attended by healthcare professionals, patients, caregivers and NMO representatives and other members of the broader stakeholder community.
The focus of the event was on experiences, best practices and challenges faced by the extremely rare bleeding disorders community, expressing the needs for increased awareness and education, fair representation and strategic collaboration with HCPs and HTCs.
Rare Disease Day 2023
To mark Rare Disease Day on 28 February 2023, the EHC European Rare & Inhibitor Network (ERIN) Committee launched a brief but comprehensive campaign on social media highlighting the key points of the ERIN Manifesto co-created and signed by participants of the ERIN Summit in December 2022.
The ERIN Manifesto outlines the needs of patients with extremely rare bleeding disorders, the challenges they face in having these needs met, and the support that they would require to have these needs met at the European and national levels.
The goal of the EHC Rare Disease Day 2023 social media campaign was to call for persons affected by extremely rare bleeding disorders or haemophilia with inhibitors to share their most urgent unmet need via an online survey to further integrate the ERIN Manifesto.