The French Foundation for Rare Diseases (FFRD) has codeveloped, in collaboration with European Reference Networks Genturis and Ithaca, in the context of the European Joint Programme for Rare Diseases EJPRD a MOOC (Massive Open Online Course) completely free named “Diagnosing Rare Diseases: from the Clinic to the Research and back”.

The third session will start next Monday April, 18th andis now open for enrollment:

https://www.futurelearn.com/courses/rare-genetic-disease.

Here below the topics covered:

·         The diagnostic process and the types of genetic tests available for rare diseases

·         The differences in rare genetic diseases patient pathways

·         Technological advances for diagnostic research

·         The role of collaborative studies and data sharing in rare diseases diagnosis

·         The impact of having a diagnosis or lacking a diagnosis on patients’ lives

·         The role and place of physiopathology approaches as well as social sciences research in the context of rare diseases diagnosis.

·         Learners will gain insight into patients’ experiences, will discuss key issues relating to this topic and will also have the possibility to undertake their own internet-based investigations.

The course is designed for individuals with a keen interest in diagnostic research and rare diseases.

Health Research Charities Ireland invites you to an upcoming Irish Health Research Forum event:
 

Embedding research in the Irish health service
09:30 – 13:00, Wednesday, 11th May, 2022
In person: The Spencer Hotel, IFSC
 

About this event

HRCI is delighted to welcome attendees back to an in-person Irish Health Research Forum meeting on May 11th.

This event will bring together researchers, healthcare professionals, patients, policy makers, funders, industry representatives and many more, to consider how we can instil a culture of research within the Irish health service. A portion of the morning will involve discussion groups, enabling you to share your perspectives and providing a much-needed chance for in-person chat and networking.

Due to the discussion-based nature of the event, a hybrid option is not possible. However, we will record the talks and share them afterwards.

Date: Wednesday, 11th May
Time: 9.30am-13.00pm
Registration is essential: Please click here
Location: The Spencer Hotel, Excise Walk, International Financial Services Centre,  Dublin 1, D01 X4C9

We are delighted to have some inspiring contributors lined up, including:

  • Prof Philip Nolan; Director General, Science Foundation Ireland 
  • Prof Paul McNally; Director, Research & Innovation, Children’s Health Ireland / Associate Professor of Paediatrics, RCSI University of Medicine & Health Sciences / Consultant in Respiratory Medicine, CHI
  • Dr Ana Terres; Head of Research and Evidence, Assistant National Director, Health Service Executive 
  • Dr Sarah McLoughlin; Patient Advocate 
  • Prof Rachel Crowley; Consultant Endocrinologist, St. Vincent’s University Hospital / Clinical Professor UCD

Please register for the event here

We hope you can join us,

The team at HRCI