Links
Links
Links for your Reference
Commission for the Rights of Persons with Disability (CRPD) is the national disability regulator which is assigned to protect the rights of persons with disability in Malta and Gozo. Since the ratification and signing of the United Nations Convention for the Rights of Persons with Disabilties by the state, CRPD was also given the role of the independent mechanism as to be the watchdog of such convention.
https://clinicaltrials.gov/
ClinicalTrials.gov is a database of privately and publicly funded clinical studies conducted around the world.
EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.
www.ec.europa.eu/health/ern_en
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
Malta BioBank (BBMRI.mt) provides population and clinical based biomolecular tools to promote biomedical research both in Malta and in collaboration with other Euro-Mediterranean countries so as to improve healthcare.
Malta Health Network (MHN) promotes the health-related interests of patients and the wider community through its regular contacts with local and international health-related Governmental Organisations, Non-Governmental Organisations, ‘Not-for-Profit’ Organisations and Patient Representative Groups.
Marigold Foundation – BOV in the Community offers valuable support wherever it is needed. The objective is to positively empower people and to work with them to raise standards, support initiatives, and strengthen voices.
The Ministry for Health – Malta is the government department responsible for the healthcare sector.
Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care, and treatment of patients with rare diseases.
Rare Barometer Voices, a EURODIS Initiative, is a community of people living with a rare disease who are willing to participate in EURORDIS surveys and studies. All of the information shared is completely confidential and anonymous and is used only to create a collective analysis.
RareConnect, a EURORDIS initiative, is an online network of rare disease communities to provide a safe space where individuals and families affected by rare diseases can connect with each other, share vital experiences, and find helpful information and resources.
www.rarediseasesinternational.org
Rare Diseases International (RDI) is the global alliance of people living with a rare disease of all nationalities across all rare diseases.
Xjenza is the journal of the Malta Chamber of Scientists with partial support from the Research, Innovation and Development Trust (RIDT) of the University of Malta.