New communities platform in the UK!!
Massive thanks to
‘If Everyone Cares’ & ‘It’s aDoddle‘ for asking us to join, and a new ‘chronic community’ bond has been made making us hopefully a bit more visible to people locally and Nationally, as a result
A new platform in the guise of a ‘Communities Map’, which helps organisations that provide support to find each other and to help get the right support to those that need it at local level.
‘It’s aDoddle’ formerly Ododow.org,
“aDoddle is working with you & your community to make it as easy for everyone to find help and support locally as it is to find a hotel or restaurant on Google Maps.”
from the site!
‘If Everyone Cares’ is a registered CIC (Community Interest Company) that has one main mission:
“Create a National Resource for Use at a Local Level to Connect People & Communities – One Click at a Time.”
from the ‘About a Doddle’ page
Flutters profile page:
It’s currently in Beta so I was really chuffed to be approached.
It will make it easier for chronic organisations and groups that offer support to find each other once it get’s going. It is currently a free service too and they build your page saving you the hassle and energy.
Thankyou to everyone for helping us to get the recognition so that I could add us to this Community Map for groups, and organisations, working to support people, and those affected by life with #chronicillness 🤩 such as carers patients family friends also open to #notjustpatients & all stakeholders, great for our awareness & advocacy efforts, social media network & chronicillnessportal
We went live on the map yesterday
Now that it is live I can update it whenever I need to, which is a bonus. Plus, because it is in ‘Beta’ I can help to shape it as it grows just the same as anyone else who has joined, so come along, take a look and get involved.
Speaking to the team at ‘If everyone Cares’ & ‘It’s a Doddle’ we have agreed to work ‘in-alliance’ as they are perfect for our website too, so mutual benefits to us both. I will be asking you our supporters to help me, to help them, to grow the Map and recruit other charities, groups, and organisations, to join.
In line with some of our external advocacy work
This Map will be perfect for any company to find organisations that they wish to speak to for research purposes too, as well as looking for charities to issue patient surveys, doctors & HCP’s looking for local support groups to helpo support their chronic patients and all kinds of other things that will make all of our lives just a little bit easier.
We must also consider this Map for when we’re organising our events and looking for supporters, steering committee members, and of course attendees.
It is of my own opinion that this ‘Communities Map’ will become the kind of platform that #pharma should be looking to engage with when looking for patients for whatever reason they need them for. Useful for marketing purposes I would think, and also for building alliances with appropriate charities, groups, and organisations that are listed. Patient engagement and pharma – patient group relationships could be forged through utilising such a platform as this.
So!
There are many reasons why you should also consider joining up and helping ‘If Everyone Cares’ and ‘aDoddle’ to grow and nurture their Communites Map.
This is really great for us …
… because it now means we have a link to a NEW platform for chronic illness related charities, groups, and organisations, which is in UK and not Europe, or US, or Australia, hahahah but UK.
See it on our #SoMe platform listings
Also – #notjustpatients
A great extension to our portfolio
FibroFlutters continuously
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
FibroFlutters – Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK and offering online support via our social media network across the globe.
PLEASE NOTE: We are not medical professionals nor claim to be, and remember that you should always consult your doctor about any health problems and not use Dr Google, or rely on information that you may read online through 3rd parties.
Please can you read our ‘Disclaimer’ & ‘Privacy’ notes and if you have a problem we are always open to discussion, just e-mail Carole fibroflutters@gmail.com
MANY THANKS in advance for your understanding –
from the administrator – fibrofly73
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