Rare Disease Day 2019: #ShowYourRare, show you care
Today marks the most important day in the rare diseases community’s calendar, Rare Disease Day. This day is a unique opportunity to to raise awareness amongst the general public and decision-makers on the issues surrounding rare diseases at national, European and worldwide level. Launched by EURORDIS and its Council of National Alliances, the main objective is to improve knowledge amongst the general public of rare diseases and encourage researchers and decision makers to address the needs of those living with rare diseases. Hundreds of events all around the world have been organised again this year at national, European and international level to mark the day.
Source: Flickr EURORDIS
One of the most notable events was the EURORDIS Black Pearl Awards ceremony which occurred on the 12 February and awarded individuals, organisations and companies as a means to recognise their utter dedication and hard work to the field of rare diseases. Fourteen awards were given in various areas to recognise remarkable achievements. On the 21 February was also organised the 26th EURORDIS Round Table of Companies Workshop on the topic: “ Rare disease therapies: do we get what we incentivise?”. It allowed for the examination of the role of incentives in therapies development, the exploration of the diverse viewpoints on the coming joint evaluation of the legislative framework for orphan and paediatric medicines, as well as the assessment of the current incentives system. At the international scale some events are also worth singling out such as the opening of a ‘Rare Lives’ photography exhibition at the European Parliament and a meeting on European Reference Networks, also held at the European Parliament.
On 21 February the NGO Committee for Rare Diseases launched a call at the United Nations’ (UN) Rare Disease Day 2019 Policy Event, on the need to include rare diseases into the forthcoming UN political declaration on Universal Health Care. The declaration is set to be adopted in September 2019 at the first UN High-Level Meeting on Universal Health Care. Hence, Rare Diseases International with the support of the NGO Committee, is producing a position paper as a means to reach this goal.
Another key event this year at the international level was the establishment of a Shire, Microsoft and EURORDIS strategic alliance on the 20 February in New York. The Alliance, named the Global Commission to End the Diagnostic Odyssey for Children, has as its main objective to address the long diagnostic journey of children affected by rare diseases. It designed a roadmap to overcome the main hurdles for diagnostic and the stakeholders intend to closely cooperate for this purpose.
Rare Disease International also held its 5th annual meeting in New York, bringing together member organisations across the globe. This represented an opportunity to engage in interactive sessions to discuss and Rare Diseases International’s advocacy plans and activities.
Local and national events are being held around the world today, and on social media platforms via the hashtag #ShowYourRare to mark this special occasion. Show your rare and show you care by taking part and helping raise awareness of rare diseases around you.
