- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Promoting orphan drug development
- Orphan drug designation
- Improve the safety of your medicines
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- Latest orphan designations and/or marketing authorisations
- EURORDIS Round Table of Companies (ERTC)
- Living with a Rare Disease
- Services to Patients
- Training Resources
- News & Events
Training Resources
EURORDIS’ training programmes and resources are designed to strengthen the capacity of rare disease patients’ representatives. Training empowers patients’ representatives to advocate effectively for rare diseases at both the local and EU level.
The EURORDIS Summer School is an initiative started by EURORDIS in 2008. It aims at training rare disease patients' representatives in the areas of clinical trials, drug development and EU regulatory affairs.
EURORDIS Summer School for patient advocates
A group of 40 participants are invited each year to learn about the clinical and regulatory life of medicinal products.
Clinical research
Aspects of clinical research are covered in this section as well as drug development for small population and the regulatory procedures available for drug licensing.
Health Technology Assessment
HTA refers to any aspect of health care ranging from prevention programmes to devices, drugs and procedures all aiming to examine the results of healthcare technology use.
European Medicines Agency
The EMA is a decentralised body of the European Union whose main responsibility is the protection and promotion of public and animal health.
Summer School Trainers
Each year the Summer School material is taught by experts in the field, find out more about who they are…
EURORDIS Summer School Alumni
To date more than 110 participants from 27 countries representing more than 45 diseases have been trained.
Learn about Clinical Trials at your own pace with a new e-learning course developed by EURORDIS
About the course
In 2006, the first capacity-building sessions on clinical trials were held in four countries leading to the EURORDIS Summer School from 2008.
Module 1 - Methodology
This course explains aspects from study design to choice of endpoints and result analysis.
Module 2 - Ethics
In this section the e-learning tool can be used to understand the need for ethics is described as well as informed consent and ethics committees.
Module 3 - Statistics
The module on Statistics complements the current e-learning tool developed to improve patient’s understanding of the drug development process.
RareConnect
A social network of Rare Disease Communities led by NORD and EURORDIS in partnership with leading disease-specific patient groups. List of Rare Disease Communities:
- Alkaptonuria (AKU)
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Behçet's Syndrome
- CAPS
- CDG
- Coats disease
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familial Mediterranean Fever
- Fibromuscular dysplasia
- Glut1 DS
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Lipoprotein Lipase Deficiency
- Mastocytosis and Mast Cell Activation Disorders community
- Multiple Myeloma
- Multiple system atrophy
- Moebius Syndrome
- Narcolepsy
- Neuroacanthocytosis
- Paraneoplastic Neurological Syndromes
- Porphyria
- Propionic Acidemia
- Pulmonary Hypertension
- Rett Syndrome
- Trimethylaminuria
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
- Alkaptonuria (AKU)
- Alström Syndrome
- Alternating Hemiplegia
- Atypical Hemolytic Uremic Syndrome
- Amyloidosis
- Behçet's Syndrome
- CAPS
- CDG
- Coats disease
- Cryoglobulinemia
- Cystinosis
- Dravet Syndrome
- DysNet, Dysmelia - Limb Differences
- Ehlers-Danlos Syndrome
- Epidermolysis Bullosa
- Erdheim-Chester Disease
- Evans Syndrome
- Familial Mediterranean Fever
- Fibromuscular dysplasia
- Glut1 DS
- Hereditary Leiomyomatosis and Renal Cell Cancer
- Hereditary Spastic Paraplegia
- Idiopathic Pulmonary Fibrosis
- Lipoprotein Lipase Deficiency
- Mastocytosis and Mast Cell Activation Disorders community
- Multiple Myeloma
- Multiple system atrophy
- Moebius Syndrome
- Narcolepsy
- Neuroacanthocytosis
- Paraneoplastic Neurological Syndromes
- Porphyria
- Propionic Acidemia
- Pulmonary Hypertension
- Rett Syndrome
- Trimethylaminuria
- Von Hippel-Lindau
- Waldenstrom macroglobulinemia
- Whim syndrome
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