L’EGA è un gruppo ombrello pan europeo che rappresenta gli interessi dei pazienti Gaucher e quelli dei gruppi di pazienti Gaucher non a scopo di lucro in tutta Europa e altrove nel mondo.
Italiano ▼ login ▼There are 2 members for the country Bosnia & Herzegovina:
• Humanitarna organizacija “Nada u bolji život”
• Udruženje oboljelih od rijetkih bolesti u Bosni i Hercegovini
Humanitarna organizacija “Nada u bolji život”
Charity organisation “Hope for a Better Life
Braće Đukića 9
88000 Mostar
Bosna I Hercegovina
tel: +387 61 106 200
Email: nadauboljizivot@gmail.com
The Hope for a Better Life charity is a charity that brings together citizens actively involved in helping and supporting people with rare diseases. The organization was established to disseminate information on rare diseases and new treatments, and to provide much-needed assistance to patients with rare diseases through direct contacts, but above all through public advocacy for the exercise of their rights by competent institutions.
The primary objective of the Organization is to assist those with rare diseases and their families in
order to improve their quality of life. This is achieved through:
The organization will act in the interest of all marginalized groups, including families in social need, and especially children from such families, the elderly and disabled, children and adults who need money for medical treatment, as well as any other groups that are somehow segregated from society. according to their financial capabilities. The organization aims to act in the interest of improving the quality of life of the community.
Svetog Save 1,
70260 Mrkonjić Grad
Bosnia And Herzegovina
Tel. & Fax: +387 50 214 075
Email: rijetkebolesti.ba@gmail.com
Udruženje oboljelih od rijetkih bolesti osnovana je s ciljem širenja informacija o rijetkim bolestima i novim načinima liječenja, te pružanja prijeko potrebne pomoći oboljelima od rijetkih bolesti kroz direktne kontakte, ali prije svega kroz javno zastupanje za ostvarivanje njihovih prava kod nadležnih institucija.
Pružiti pomoć oboljelima od rijetkih bolesti i njihovim porodicama u cilju poboljšanja kvalitete njihova života kroz: