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  • About
  • Communities
  • Specialist centres
    • ALL
    • Bone Diseases
    • Cardiovascular Disorders
    • Chromosomal Abnormalities
    • Congenital malformations and Genetic/Hereditary Syndromes
    • Gastroenterological Disorders
    • Dermatological Diseases
    • Ear Nose and Throat and Craniofacial disorders
    • Haematological Diseases and Malignancies
    • Hepatic Diseases
    • Hereditary Metabolic Disorders
    • Immunological Disorders
    • Male and Female Reproductive Diseases
    • Neoplastic Diseases/ Oncology
    • Nephrological Diseases
    • Neurological Diseases
    • Neuromuscular diseases
    • Obstetric & Perinatal diseases
    • Ophthalmological diseases
    • Psychiatric Disorders
    • Rare Endocrine Diseases
    • Respiratory diseases
    • Rheumatic and Musculoskeletal Diseases
    • Urogenital Diseases
  • Patients
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Blog

Scientific publication: Co-constructing effective collective intelligence networks in rare diseases: a mixed method approach to identify the parameters that matter for patients, professionals and policy-makers, piloted in Cyprus.

Publications, Project

e-Hanbook for Telecollaboration in Healthcare: Findings and Lessons Learned in Rare Diseases

Publications, Project

A PID causing a heavy burden of disease must always be recognised as a disability

Rare Diseases, Invisible disabilities, Rare diseases at work, Primary Immunodeficiencies, Positions

Chronic pain and management

Chronic pain

Trimethylaminuria

Rare Diseases, Trimethylaminuria, Hereditary metabolic disorders

Invisible disabilities and discrimination

Rare Diseases

PLATINUM Award for RARE-e-CONNECT at the Cyprus Healthcare Business Awards

Awards

RARE-e-CONNECT at the European Conference on Rare Diseases and Orphan Drugs ECRD 2022

Conferences

RARE-e-CONNECT on IRDiRC's State of Play - Stimulating multistakeholder engagement

Publications

Trial gene therapy for Duchenne Muscular Dystrophy

Gene Therapy, Neuromuscular Diseases , Rare Diseases, Duchenne Muscular Dystrophy

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Invisible disabilities Rare Diseases Rare Diseases Rare diseases at work Neuromuscular Diseases Gene Therapy Duchenne Muscular Dystrophy Cystic fibrosis Myasthenia Gravis LAM disease

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The Project POST-DOC/0916/0222 is co-financed by the European Regional Development Fund and the Republic of Cyprus through the Research and Innovation Foundation. The Host Organisation is Cyprus Alliance for Rare Disorders.

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