Prepared for Colleen S. | Delivered August 15, 2019
Rare Disease Patient Experience
To understand rare diseases patient experience in Asia, Eastern Europe, West Africa, and LATAM in order to help guide training sessions.
Bulgaria has a national
policy that is aimed at improving the patient experience of those suffering from rare diseases in the country. The
was developed in conjunction with health authorities, clinicians and patient representatives.
is expected to improve awareness of the disease in Bulgaria, access to treatment, and "
to integrate medical
and social approaches to rare disease patients and their families in Bulgaria."
However, a study into the rare disease landscape in Bulgaria showed that although the national policy on rare diseases has been adopted, the
implementation is still limited
leading to poor patient experience.
have a legal provision for early access to rare disease treatment for patients.
Turkey passed a national
policy that is aimed at improving the patient experience of those suffering from rare diseases in the country, however, implementation of the policy has been delayed.
While there is no legal provision for early access to treatment for patients with rare diseases in Bulgaria, there is a "
program available for
patients with unmet medical needs meeting defined criteria."
In addition, Turkey’s national reimbursement scheme "
enables both availability
(through importation) and access to orphan drugs when these drugs are unavailable, unauthorized and inaccessible."
2083 assignments | 5.0