Rare Disease Day 2018: what a success!
A year has gone by and this 2018 Rare Disease Day (RDD) event has been a real success! RDD was celebrated in over 90 countries with patient groups and medical professionals hosting nearly 500 events worldwide!
The participation was great with thousands of people getting involved in the #ShowYouRare initiative on social media by painting their face and also by showing their support using the #RareDiseaseDay.
This year, new countries such as Togo, Ghana, Trinidad & Tobago, Cape Verde and the Syrian Arab Republic joined the movement.
RDD also marked the first anniversary of the European Reference Networks for rare diseases. The European Commissioner for Health and Food Safety, Vytenis Andriukaitis mentioned the successful impact of ERNs on patients' lives around Europe, and highlighted how sharing and connecting medical knowledge, accurate diagnosis and appropriate treatment have been beneficial to many thousands rare disease patients.
The ERNs goals are to connect patients with the continent’s top experts and provide concrete benefits to thousands of patients. By exchanging scientific evidence and sharing knowledge within one another, the ERNs contribute to the research and to the sustainability of healthcare. Over the coming years, these actions will help improve rare disease patients’ quality of life.
In the same vein, the World Health Organization (WHO) Director-General, Tedros Adhanom Ghebreyesus, has enhanced the action of the international networks toward universal health coverage to support health services and provide a sustainable access to diagnosis and treatments through the ‘Fair Pricing Forum’. The Director-General stated the importance of contributing to a world in which no one is left behind.
RDD was also the perfect opportunity to announce the National Organization for Rare Disorders (NORD) collaboration with the Food and Drug Administration (FDA) on a 'Patient Engagement Activity' pilot project aiming to contribute to better understanding how living with a rare disease is perceived by patients through their own experiences. Their goal is to raise awareness about rare diseases and to accelerate regulatory decision-making processes to advance research and new product approvals bringing new therapies onto the market.
To conclude the Vatican showed its support by expressing its solidarity toward rare disease patients and asked public authorities to get involved with scientific and medical research by making available scientific evidence, fundings and effective healthcare. Cardinal Turkson mentioned the importance of international cooperation to tackle barriers and called pharmaceutical companies to donate some of their profits to the research of new therapies.
Rare Disease Day 2018 once again provided political momentum for the rare disease cause, making it a day to remember for the whole community.
