Support 500 people with rare diseases in Romania

by Asociatia Prader Willi din Romania
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Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania
Support 500 people with rare diseases in Romania

Summary

This project will support 500 patients with rare diseases in Romania, providing them with the support to face their daily challenges through face to face and online medical consultation, therapies, counseling and psychological support for patients and families at NoRo Center and NoRo Center online services: www.centrulnoro.ro. We will bridge the gaps between medical and social services establishing and training a support network of community nurses to orient patients to the services they need.

$50,000
total goal
$48,446
remaining
32
donors
2
monthly donors
7
months

Challenge

The problem we are addressing is the limited access to proper care for 1 million patients with rare diseases in Romania. 90% of them are undiagnosed, live isolated and struggle to access the services they need, 50% are children, and 65% of patients had to visit 7 different physicians before they were diagnosed. Approximately 50 % of the Romanian population lives in rural areas with no care infrastructure and services. Care pathways are not structured and patients don't know where to go.

Solution

In the last 9 years NoRo Center provided integrated care, medical and social support and therapies for approximately 1800 patients with rare diseases (900 of them are in our registry since 2015). We are extending our services online (consultations, therapies, therapeutic groups of patients and training) www.centrulnoro.ro. To support the vulnerable people from villages we will train 300 community nurses on case management for rare diseases to inform and orient patients to Centers of Expertise.

Long-Term Impact

The project will improve the quality of life for 500 patients with rare diseases through therapies, training, sharing experience with patients in groups, learning how to cope with the diseases and overcome the challenges. Providing rare diseases case management training for 300 community nurses will create a resource network at national level to coordinate care pathways and empower patients with rare diseases and will bridge the gaps between between medical and social care.

Additional Documentation

This project has provided additional documentation in a PDF file (projdoc.pdf).

Resources

http:/​/​www.apwromania.ro
NoRo Center - online and face to face services;
Guide of services

Organization Information

Asociatia Prader Willi din Romania

Location: Zalau, Salaj - Romania
Website:
Facebook: Facebook Page
Twitter: @DanDorica
Project Leader:
Dorica Dan
Zalau, Salaj Romania
$1,554 raised of $50,000 goal
 
40 donations
$48,446 to go
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