Introducing the SNJ collaboration with patientINFORM

SNJ, patientinform

Some exciting news today!

You know when you're looking online for information such as medical articles or research and you come up against one paywall after another? And it's always the information that would be really useful to help you better understand a condition your family is affected by or empower you to discuss the condition with the medical professionals concerned - BUT you can't get your hands on it without splashing the cash which, as parents advocates, we can barely afford.

Well, from now on, we will be able to help you access some of the information you need.

patient inform

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Introducing patientINFORM

patientINFORM

Special Needs Jungle is incredibly proud to have been accepted as a member by patientINFORM, a program that brings together the publishers of the world’s leading medical journals and the health organisations to provide patients and their caregivers with access to some of the most up-to-date, reliable and important research available about the diagnosis and treatment of specific diseases.

PatientINFORM: Publishers and patient organizations working to empower patients and their families by providing access to and interpretation of the latest and most important clinical research in medicine.
I came across patientINFORM as a volunteer for RareConnect, part of Eurordis, the rare diseases organisation. The scope of the medical information available, including about learning disabilities and good practice, is extraordinary. I realised that parents and carers being able to access some of this information would help them to advocate better for their sons and daughters and provide up to date peer-reviewed information you can discuss with those who help our children too.

So, Debs, Angela and I discussed whether we could qualify and approached them with a request. We are delighted to say that patientINFORM has decided that we most definitely qualify for the spirit of the program and we could not be more thrilled - *does a little dance* type thrilled. We hope you will be too as this gives you a chance to help educate yourselves and those caring for your children who may not have seen the research already.

We will add articles we find that we believe will be useful ourselves, with a link to the accessed material AND we have added a special form where you can also request articles that you have found behind a paywall. As patientINFORM members, we join major names in the health industry such as Orphanet, Eurordis, The American Cancer Society and The American Heart Association.

How it works

So how do you get hold of that crucial piece of research or article that you'd like to read?

First of all I'd like to emphasise that it doesn't mean we suddenly own any copyright so when you access material through the special link provided, you must not download to distribute the material yourself, it is there for your information and knowledge.

You can, of course, share it via social media from our link page. Not every medical journal in the world is covered, but many are so it's always worth asking via the form if we can get it on your behalf.

The process is:

  1. You will need to register as a member of SNJ to be able to make your own request, which you will be able to do at our SIGN UP page before you make your request.
  2. After you log in, you end up at a page with options to add resources or make a request for research, so you select the option to make a request.
  3. You fill out the form on this page with the title of the journal and the article, your details and you submit it to us. You should receive an automated acknowledgement.
  4. We let you know if and when we are able to access the article and add the summary and link to a special page. The research link is then available to all our readers.

Thanks go to Margaret at patientINFORM for accepting us and we hope that for our readers, it will mean a huge amount to be able to find the information that you need much more easily.

Let us know what you think!

(If you experience problems with the form, let us know so we can fix it.)

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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