Event

01 Feb 2019
When:
Fri 01 February, 2019
To :
Fri 01 March, 2019
Location
press campaign
Romania
2019 events in Romania
Organizing the meeting
30 Jan 2019 - 31 Jan 2019 Bucharest
RARE DISEASE DAY EVENTS
01 Feb 2019 - 01 Mar 2019 press campaign
image
Gaucher disease is a rare
01 Feb 2019 - 28 Feb 2019
Organizing a Hackathon
22 Feb 2019 - 24 Feb 2019 Cluj Napoca
Presentation of the achievements
26 Feb 2019 - 08 Mar 2019 Zalau
image
Art Fair - exibition of
26 Feb 2019 - 08 Mar 2019 Zalau
National Rare Disease Conference
28 Feb 2019 - 01 Mar 2019 Bucharest
image
Our goal is to support
28 Feb 2019 Bucharest
We invite you to participate
28 Feb 2019 Bucharest
Romania

Rare Disease Day 2019 - Bridging Health and Social Care 01 February 2019 - 01 March 2019 press campaign, Romania
0260610033
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.

Campaign Objectives:

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.

Share this