At the NIRDP launch on 29th February, Rare Disease Day, Edwin Poots, the NI Minister for Health, Social Services and Public Safety, launched a public consultation on a UK plan for rare diseases. (See the consultation document here). This is a joint consultation, run by the four UK Health Departments.
Rare Disease UK and the Northern Ireland Rare Disease Partnership are concerned that the consultation document presents an overly optimistic view of the ability of each of the UK’s health services to respond effectively to the needs of all patients affected by rare diseases. RDUK are organising a series of events in order to create discussion around the consultation. They want to gather as much input as possible to influence the final plan, making sure it is effective, and can make a real difference to the lives of people living with rare diseases in Northern Ireland and across the UK.
The Northern Ireland event will take place at the Dunsilly Hotel, Antrim on the 8th of May between 10am and 4.30pm. Places are limited so if you wish to attend please complete the attached registration form and send to Samantha Reeve via email at firstname.lastname@example.org.
NIRDP and RDUK are hoping to gain the views of a broad range of stakeholders at this event. Those in attendance will include patient organisations and patients/carers, clinicians, health professionals, commissioners, researchers, industry and anyone with an interest in improving services and facilitating research to benefit patients with rare diseases.
A webinar for Northern Ireland, which will summarise Rare Disease UK’s views on the consultation, along with advice for those interested in responding, will be held on the Monday 16th of April, at 1.30pm until 2.30pm. The webinar will include a presentation by the Chair of Rare Disease UK, Alastair Kent and time for questions and discussion. [A webinar is a live presentation delivered over the internet].
If you are not available to view the webinar live, you can still download it afterwards from our website. You will still be able to email us any questions you may have.
Please make sure that your computer is updated to ensure you don’t have any technical difficulties using the programme. You can do this by clicking here anytime before the event is due to begin.
You will need an internet connection and speakers or headphones.
When you join the webinar, please ensure that when entering your information, you write the name of your organisation, or your interest in rare diseases (e.g. patient, carer, professional occupation) into the ‘location box’ NOT your geographical location.
RDUK are grateful to the following companies for their support in enabling these consultation activities: Actelion, Alexion, Baxter, Bio Marin, CSL Behring, Genzyme, GSK, Nordic, Orphan Europe, Pfizer, Shire and Swedish Orphan.