Rare Disease #IrishMed Twitter Chat

Ahead of International Rare Disease Day next Monday, February 29, tonight’s #IrishMed Twitter Chat will focus on the topic of rare diseases.

This week’s chat, run by Dr Liam Farrell, is co-hosted by Anne Lawlor from the Genetic and Rare Disorders Organisation (GRDO) and Derick Mitchell from the Irish Platform or Patients, Science and Industry (IPPOSI).

The chat which takes place from 10pm to 11pm will cover the following questions;

  • T1: Is it ‘unusual’ to have a rare disease?

  • T2: Do all rare diseases need orphan drugs, or better management/treatment?

  • T3: How can awareness of of rare disease presentations be improved among healthcare professionals?

  • T4: How can people with rare diseases and their carers be better supported and empowered?

Dr Liam Farrell @drlfarrell

Anne Lawlor, GRDO @GRDO_IRELAND

Derick Mitchell, IPPOSI @DerickOMisteal

Monday, February 29, 2016 marks the ninth international Rare Disease Day coordinated by EURORDIS (European Rare Disease Organisation). On and around this day hundreds of patient organisations from countries and regions all over the world will hold awareness-raising activities based on the slogan “Join us in making the voice of rare diseases heard”. International Rare Disease Day will be marked in Ireland with a conference in Dublin Castle, organised by the Rare Disease Taskforce, click here for full details.

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