Rare Disease Day 2019 - Bridging Health and Social Care
01 February 2019 - 01 March 2019
press campaign, Romania
Hosted by The National Alliance for Rare Diseases Romania - ANBRaRo
RARE DISEASE DAY EVENTS 2019
The National Alliance for Rare Diseases Romania - ANBRaRo and its members, in partnership with Eurordis: www.eurordis.org, organizes the International Rare Disease Day campaign in February of each year since 2008, in order to raise awareness among decision-makers and the general public on the issue of rare diseases and their impact on patients' lives.
2019 Theme: Bridging health and social care
The slogan of the 2019 campaign: Show your rare! Show that you care!
The goal of the 2019 campaign is to improve the quality of medical and social care for patients with rare diseases (implicit, rare cancers) in Romania by linking care services and promoting integrated care.
I. Improving the understanding of the needs of patients with rare diseases by the entire community.
II. Updating health and social policies in rare diseases with international development in the field and promoting rare diseases as a public health priority at global level.
III. Identifying solutions for linking health services with social services at national level.
Target group: patients with rare diseases, their families, specialists involved in the diagnosis and management of rare diseases, representatives of the Ministry of Health, CNAS, NAMMD, MMJS, ANPD, ANPDCA, INSP, health commissions, industry, etc.
Organizing awareness events about the needs of patients with rare diseases.
Launch of the 2019 campaign in the press (updated throughout February)
a. presentation of a position paper on integrated care for rare diseases.
b. Informing the community about the events to be organized in the campaign.
c. Presentation of the position paper to the National Authorities.