Event

22 Feb 2019
When:
Fri 22 February, 2019
To :
Sun 24 February, 2019
Location
tbc
Cluj Napoca
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
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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
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Art Fair - exibition of
26 Feb 2019 - 08 Mar 2019 Zalau
National Rare Disease Conference
28 Feb 2019 - 01 Mar 2019 Bucharest
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Our goal is to support
28 Feb 2019 Bucharest
We invite you to participate
28 Feb 2019 Bucharest
Romania

Hackathon 22 February 2019 - 24 February 2019 tbc, Cluj Napoca, Romania
0260-610033
Hosted by The National Alliance for Rare Diseases Romania - ANBRaRo

Organizing a Hackathon in Cluj Napoca on "Connecting health services with social services"

Theme: "Care coordination for patients with rare diseases"

Participants: Medical specialists, IT specialists, social workers, therapists, patients, etc.).

The best solutions will be presented at the National Conference on 28 February in Bucharest.

Patients with rare diseases are spread nationwide in different regions, requiring centralized intervention. Currently, there are insufficient national services for patients with rare diseases, and the issue of rare diseases is complex and interdisciplinary:  http://insp.gov.ro/sites/cnepss/wp-content/uploads/2016/01/ analysis-by-situation-2016.pdf

The medical and social services infrastructure is deficient and there is no communication between services, while over 50% of patients live in rural areas, isolated and without access to services.

We believe that we have a good IT infrastructure and human resources available to connect existing services virtually, improving patient circuitry and shortening waiting times for information, diagnosis and access to services.

Organizers:

• The National Alliance for Rare Diseases

• Prader Willi Association in Romania

• The Romanian Cancer Association

• FreshBlood HealthTech Community

 

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