With Research, Possibilities are Limitless
28 February of every year, is dedicated to raising awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. It also targets policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
This year’s theme is “Research” and the day’s slogan will be ‘with research, possibilities are limitless' which aims to highlight the importance of research and the possibilities that it can bring.
According to http://www.rarediseaseday.org, due to the rarity and diversity of rare diseases, research needs to be international to ensure that experts, researchers and clinicians are connected, that clinical trials are multinational and that patients can benefit from the pooling of resources across borders.
Initiatives such as the European Reference Networks (networks of centres of expertise and healthcare providers that facilitate cross-border research and healthcare), the International Rare Disease Research Consortium and the EU Framework Programme for Research and Innovation Horizon 2020 support international, connected research.
Activities by our members around the world include:
International Prader-Willi Syndrome Organisation (IPWSO) with 105 member countries worldwide, which will be raising awareness about Prader-Willi syndrome which affects approximately 1:20,000 live births. To mark this day, IPWSO will raise awareness using social media platforms. Join in on social media: Facebook page is: https://www.facebook.com/IPWSO/ Twitter account: https://twitter.com/ipwso Website: www.ipwso.org Blog: http://ipwso.blogspot.co.nz/
Malaysia Rare Disorders Society will be holding an event that will include representative families from over ten rare disease support groups, the geneticists and medical services support groups and undergraduates. The event will be held on Sunday 26th Feb and parents will have the opportunity to undergo free screening for BP, BMI, blood test for sugar and cholesterol during the first part of the morning, by courtesy of the Heart Foundation of Malaysia. In the second half of the morning the will be a talk by the representative from the Department of Social Welfare Malaysia, followed Q&A on the national guideline for 2016-2020. The children will be participating in various indoor activities under the supervision of the medical undergraduates from the Biomedics Faculty, University Malaya Kuala Lumpur.
Mucopolisaccaridosis and Related Lysosomal Storage, Turkey has been celebrating the Rare disease Day together with the medical school students for two years. Through this they can ensure that medical school students who are the researchers and physicians of future have the opportunity to get to know the children who are suffering from rare diseases. Their awareness and consciousness of rare diseases are increasing and they are becoming more enthusiastic about working in this area. They believe that this mutual acquaintance will make the collaboration of patients and physicians easier in the future, given that a medical research process needs at least two parties: researchers and patients. They hope that the collaboration of these two parties will create possibilities for all people suffering from rare diseases.
Twelve member organisations of the National Alliance for Rare Diseases of R. Macedonia will mark rare disease day in four cities in Macedonia. In Skopje, the National Alliance for Rare Diseases of R. Macedonia will hold a press conference and a debate in the EU infocentre. In Bitola, a press conference will be held and promotional material we will be shared with public. In Ohrid, events will include a marathon, an athletic cross and mountaineering. In Prilep, a public event for raising awareness on rare diseases will be held.
Click here to read about events carried out in Latin America (in Spanish)