So once more I have been representing Pseudomyxoma Survivor and this time I found myself at the Eurordis Membership Meeting in Budapest.
Representing 30 million people affected by rare diseases throughout Europe, Eurordis is a non-governmental patient-driven alliance of patient organisations representing 755 rare disease patient organisations in 67 countries. This year, Eurordis celebrates 20 years of representing the rare disease community. They pride themselves on achieving the following over that time:
- From ignorance to increased awareness
- Rare diseases now recognised as a public health priority
- An empowered rare disease community
- A strong, cohesive patient voice
- Increased patient engagement in rare disease policy, research, healthcare and development of medicines
- Less isolated rare disease patients and families
- An escalation of new medicines for rare diseases
- Translation of scientific advancement into therapeutic innovation of therapies
- Expert centres and a European network providing the best possible care
- Diagnosis of more rare diseases
With increasingly limited Government resources (and the impact within the UK of Brexit), we must all be aware that healthcare may not continue to be a national priority in each of our own countries, this is really worrying for rarer diseases like ours as we could be pushed further and further down the priority list. Working alongside other patient groups, healthcare professionals, policy makers, patients and their carers can only but strengthen our position.
Eurordis are at the forefront of patient advocacy and connecting those with rare diseases. They have emphasised the importance they place on the UK being part of what they do moving forward.
The 2-day conference was interesting and educational. I went on a workshop looking at a survival kit for small patients organisations. Did you know for example that the colour purple equates to power and yellow represents charity and positivity? I’m pretty glad that they have been picked as our Charity colours – power, charity and positivity – I’ll take that!
Without a doubt we are well known within this community – look whose name popped up as an advisor when I was given the findings of a report; none other than Pseudomyxoma Survivor’s founder Dawn Green! Due to Dawn’s tenacity, Eurordis also have us to thank for having Sean Ferrer Hepburn as their Rare Disease Day Ambassador for 2014, 2015, 2016 and 2017.
NF Kinder, a small charity in Austria, are really good at fundraising. Their speaker told us that “we must ask, ask and ask again” and he made me laugh when he suggested that asking for money is not begging or scrounging that it is an enabler – we are simply teaching the joy of giving….
It’s good to know that we are part of something bigger, for the first 10 years of my disease I did not know a single person who had this cancer and I only had access to very limited information. Having this small group of patients and carers, within Pseudomyxoma Survivor, who share this disease together helps to lessen the load.
For those that haven’t been to Budapest – I thoroughly recommend it – what a beautiful city.
- Presentations from the Membership Meeting are available on the Eurordis website. Please go to