RESOURCES

EmpoweRARE2021 project resources

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EmpoweRARE2021 project opening press conference

Full video: https://youtu.be/rpHQ8NetnvM
BHA presentation (available in Bulgarian): Download here

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Project INFORMATION BROCHURE

Official project information brochure containing project description

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BHA News release 01.09.2021

BHA news release informing medias of the continuation of the EmpoweRARE project

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BHA News release 02.09.2021

BHA news release informing medias of the challenges people with rare disease face in the COVID-19 crisis

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EmpoweRARE2021 newsletter (Issue 1)

Official project newsletter (September - December 2021)

NEWSLETTERS

EmpoweRARE project newsletters

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EmpoweRARE newsletter (Issue 1)

Official project newsletter (January 2020)

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EmpoweRARE newsletter (Issue 2)

Official project newsletter (April 2020)

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EmpoweRARE newsletter (May special edition)

Special project newsletter (May 2020)

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EmpoweRARE newsletter (Issue 3)

Official project newsletter (July 2020)

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EmpoweRARE newsletter (August special edition)

Special project newsletter (August 2020)

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EmpoweRARE newsletter (Issue 4)

Official project newsletter (December 2020)

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EmpoweRARE newsletter (Issue 5)

Official project newsletter (May 2021)

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EmpoweRARE newsletter (Issue 6)

Official project newsletter (June 2021)

RESOURCES

EmpoweRARE project resources

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EmpoweRARE project opening press conference

Full video: http://www.bta.bg/en/video/show/id/0_durzd2wi/

BHA press release (available in Bulgarian): Download here

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Project INFORMATION BROCHURE

Official project information brochure containing in-depth project description

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Translation of EURORDIS COVID-19 open letter

Translation of the open letter by EURORDIS regarding COVID-19 instructions (Available in Bulgarian language only)

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BHA letter addressed to the Healthcare Minister

Letter addressed to the healthcare minister in regard with EURORDIS open letter with recommendations for treatment of people with rare diseases with COVID-19 (Available in Bulgarian language only)

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Project partner FRAMBU presentation

Presentation describing project partner FRAMBU activities

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Project partner FRAMBU video presentation

Video presentation of project partner FRAMBU

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BHA official position on Action Plan for implementation of the final recommendations to the Republic of Bulgaria addressed by the UN Committee on the Rights of Persons with Disabilities (2021-2026)

(Available in Bulgarian language only)

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Open letter to Ministry of Health

Open letter expressing the official position of the Bulgarian Huntington Association on the urgency of providing vaccines against COVID-19 to people with rare diseases in Bulgaria
(Available in Bulgarian language only)

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Answer to open letter to the Ministry of Health

Official answer to the open letter by the Chief State Health Inspector (Available in Bulgarian language only)

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Official stance letter by BHA

Bulgarian Huntington Association opinion piece on the Decree amending the Methodology for conducting individual assessment in support of the needs of people with disabilities
(Available in Bulgarian language only)

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Request letter Article 95

Letter requesting to have the list of chronic diseases under Article 95, paragraph 3, of Ordinance №10 / 01.09.2016 of the Ministry of Education and Science for organization of activities in school education updated.
(Available in Bulgarian language only)