Complex Rare Diseases
- Rare diseases share many of the same characteristics:
- There is little general awareness of the condition
- Diagnosis is often a lengthy and emotional process
- Treatment for people with rare diseases is fragmented as individual symptoms are treated rather than the person as a whole.
- In response to some of the issues highlighted above. HearFirst was commissioned in 2009 by the Charity Alstrom Syndrome UK to develop and deliver awareness training for the rare disease Alstrom Syndrome.
- We are able to use this proven and successful model to develop an awareness training course for other rare conditions
- On the day of the training, in addition to HearFirst tutors we also welcome volunteers to give a personal account of the issues they face with the condition.
- We always offer an interesting blend of theory and fun interaction to ensure everyone is able to participate, enjoy and ‘do’ on all courses. We strip out medical jargon and ensure the training is easy to understand with maximum impact.
- HearFirst is a stakeholder in the EURO-Rare Diabetes Project. The project is a collaboration of doctors, scientists and patient support groups from all over Europe. The aim is for this register to be a key instrument to increase knowledge on rare diseases and develop clinical research.
HearFirst will advise and input on training issues around Disability Equality and Awareness. For more information www.euro-rare-diabetes.org
What can we offer you?
- Development - Tailored research and development of a training course to help raise awareness and profile of specific rare diseases.
- Delivery - We can write tutors training manuals for you to deliver the training yourself or we can use HearFirst in house tutors to deliver training.
- Full or half day courses on ‘Understanding Alstrom Syndrome’
Who is it for?
- Staff/employees who may come into contact with someone with the rare disease e.g. medical profession, social/support workers, education providers etc
- Other people associated with your organisation e.g. volunteers.
What do you need?
- Let us know your initial thoughts on what you need and we can provide more a detailed proposal including information about the research we need to do to develop the training.
Rare Disease sample course outlines (PDF’s)
- To check availability, book training or to speak to a real person contact us
- To find out more about us delivering training at your organisation, go to In House Courses
- Go to Case Studies for information on work already undertaken and testimonials