CamRARE Emergency Passport (Information Document/Card) – A very useful resource – UPDATE
Since this information was published in December, MAA has now partnered with CamRARE and there is now a customised version of the rare patient passport available for download.
- Members should apply for your passport via the CamRARE website here: https://www.camraredisease.org/rare-patient-passport/
- Click on ‘Register for your rare patient passport’.
- A question asks if you would like a customised passport from a particular patient group. Simply select the Myositis Association Australia from the menu.
- You will then automatically receive an email with the passport, user guide, reference notes and a video link showing them how to fold it.
Please do not distribute the passport file as CamRARE monitor downloads so they can understand and report on the reach of their work.
The CamRARE ‘This is Me’ Rare Patient Passport is a printable PDF and has been used successfully by our Secretary, Natasha Ball, here is her experiance with the passport.
I went onto this website, had to register to download the document template (one of the pitfalls of this option). But once download, document can be edited to suit your personal preferences. Supplied with guidance notes, it’s easy to complete and keep updated.
I printed it out and also provided digital copies to my Husband and adult children. My family members keep a A4 copy in a plastic sleeve readily available and also a photo of the document on their phones. It can be used as an A4 page, or folded to fit in a lanyard wallet
In the case of an emergency, I am generally too unwell to speak to ED or Ambulance staff. In emergency scenarios my family members hand this document to Ambulance and ED staff.
Ambulance and ED staff were extremely grateful and were able to provide prompt medical care. As most of us would be aware, Myositis is considered a group of rare diseases, often characterised by complexities and extensive medical information.
In stressful situations this can be difficult to remember as a patient, family members and carers. The document removes the pressure and stress upon the patient, family members and carers to deliver the appropriate medical information in a medical emergency.
