Since May last year I have been working on this interesting project to co-design a Route Map for 2 specific genetic rare diseases: ALD – Adrenoleukodystrophy and AMN – Adrenomyeloneuropathy.
The Route Map for ALD and AMN is a user led research project to create a repository of information and knowledge about two specific rare diseases. This Route Map intends to provide a comprehensive resource to be used by patients, families and health and social care professionals.
A rare disease is defined by the European Union as one that affects less than 5 in 10,000 of the general population.
Adrenoleukodystropy and Adrenomyloneuropathy are so “quite rare” diseases, as they affect 1 in 20,000.
When I started working on this project I knew almost nothing about rare diseases, like everyone else.
I have learned a lot from this experience and not just from a professional point of view.
I have realised that
Very interesting video from the London Sustainability Jam blog
Did you already know that:
- 1 in 17 people will develop a rare condition at some point during their life
- There are 30 million people affected throughout EU
- In the UK 3,5 million people will be affected by a rare disorder at some point in their life time
- There are over 6000 recognised rare conditions each with different symptoms and prognose
from Rare Disease UK
Unless you or someone in your family is affected by a rare condition, I can assume your answer will be “No”.
There is such little information and awareness, even among doctors and specialists, about rare conditions for the simple reason that they are so rare!
..and ten ways to make the best of it.
So, enjoy the reading:
Ten Big Questions about the Big Society
…and if you are interested, don’t miss tomorrow Pat Kane lunchtime seminar at The young Foundation
Speak out for Nazziwa!
“Deep down I felt, if the police had acted fast, Nazziwa would have her arms” – Nazziwa’s father.
Please, act fast! Send your messages to Nazziwa (via ActionAid) in time for International Women’s Day.
Spread the voice, thank you!
ActionAid says ‘Get Lippy’
“For millions each year, 8th Mar is a time to celebrate the amazing progress women have made. Since the first IWD when people marched across Europe for women’s right to vote, work and hold public office amazing economic, political and social achievements women have been made. For ActionAid, it’s also time to shine a spotlight on the struggles women are facing today in the developing world and to build solidarity to tackle the urgent challenges ahead. We want to work towards a world where women and men, girls and boys have equally good chances in life, free from want and free from fear.”
From 18th Feb the ActionAid website will feature videos, photos and blog posts from women facing serious injustices. This will include the story of Florence who was kidnapped by Ugandan rebels, the Lord’s Resistance Army and was inspired by that event to stand up for vulnerable women. On International Women’s Day, these women will be taking to the streets and taking part in celebrations.
These are real women who face real struggles. Your messages will show them that they’re not alone in the fight for equality.
As a blogger I support ‘Get Lippy’ campaign!
If you are a blogger with a passion for women’s rights, join the campaign to drum up as much discussion, debate and attention as possible.
According to some theoretical background, services encounters can be classified into two categories: standard and relational ones.
Generally, in standard service encounters, providers and customers perform according to clearly defined roles, while relational service encounters are mostly unmediated in terms of rules and scripts.
Talking about these topics referred to social design, I found that it is quite common to consider social services a matter of “relationship”. I’m not sure about this. In my experience I found that the lack of high “standards” is a typical limitation in the not-for-profit sector. Designing for behavioural change needs, instead, frameworks, strict methods and tools.
I have tried here to visualize what I am thinking about this topic within a Cartesian System. I have represented on the axis different levels of standardization and relation, from the lowest to the highest one. In the 4 quadrants I determined 4 different kinds of front line staff, according to the correlation between the 2 variables.
I propose to use this scheme in order to classify all the aspects of the social design process: read more…
“On 11 March, 2011, people interested in service and customer experience will meet all over the globe. In a spirit of experimentation, co-operation and friendly competition, teams will have 48 hours to develop brand new services inspired by a shared theme. “
If you are interested, this is a call for action for service designers, social designers and design thinkers. Stay tuned. Follow www.globalservicejam.org
Twitter account: @GSJam
and the hashtag: #GSJ11
I’m spreading the word…
Coproduce it
Last Monday in Milan you missed a big event: there was the First Italian Uncoference on Co-production and public services.
First of all, thanks to all the participants (who contributed to realize a great work session) and special thanks to Marianna Recchia, who has the promoted this adventure involving a lot of passionate people with different backgrounds.
We started the Unconference with Alice Casey from Nesta (what’s better?) and she introduced many of the key concepts of the day read more…
Check out my presentation for the First Unconference on co-production in public services
