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Welcome to Living (Well) With Rare Disease!

Welcome to Living with Rare Disease!
by Lori Verton
Founder, ACMCRN
Rare Disease Warrior
There is a certain quality about the experience of living with a Rare Disease: a bit of an oxymoron in its character. By definition, a Rare Disease patient is one whose disease is found in less than 200 000 Americans (or about 1 in 1500) at any time. For those in Europe, the definition is similar at 1 in 2000 people, (See:https://www.rarediseaseday.org/article/what-is-a-rare-disease).For those of us with any one specific disease entity, indeed we are a rare bunch, The spinal cord disease that I deal with, Adhesive Arachnoiditis, falls under this definition. 

Paradoxically, when Rare Disease patients are gathered together, we are actually not that Rare at all! An estimated 350 million people globally are diagnosed with one of the over 6000 known types of Rare Disease. (For a list of all types recognized in EU, see here: https://rarediseases.org/for-patients-and-families/information-resources/rare-diseas…

Great New ACMCRN Arachnoiditis Review is Hot off the Press!

Looking for some great, timely articles on Chronic Pain, Living with Chronic and Rare Disease and so much more? 

Top article this week, just in time for summer: https://themighty.com/2018/07/medications-cause-sun-heat-sensitivity/

Full ACMCRN Arachnoiditis Review July 15, 2018

Come join us in our Facebook groups: https://www.facebook.com/groups/ACMCRN/

https://www.facebook.com/groups/arachwarriors/?ref=br_rs

Is Loving Touch the Ultimate Painkiller?

Hold my hand: Touching may ease pain by syncing brainwaves



For some of us living with Rare Disease, significant, permanent, intractable chronic pain is a daily reality. We spend our time trying to find ways to cope with this pain so that we can remain active and functioning participants in society. But those of us living in such distress often find that the only relief comes when an low stable opioid dose is added to our multi model treatment plans. Those previously in too much pain to be active often find a restoration of some degree of function with the proper techniques and medications over time. It can take years to get the right balance of medicine, physical activity and rest, but the current North American Opioid Crisis is putting pressure on those of us who use such medications to give them up.



While we wait for better pain treatments to be researched and created, we must do all we can to employ as many techniques as possible together to find some degree of relief. It's exc…

NCATS Toolkit - Home

NCATS Toolkit - Home
Living with Rare Disease was an isolating experience for so many, until the advent of the internet and social media. It's exciting to see the Rare Disease community as a whole coming together with tool kits and other resources! We stand on the precipice of fabulous new Rare Disease research initiatives.


#RareDiseaseDay 2018 is less than a week away. Whether your zebra herd is #Castlemans, #PXE or #arachnoiditis, we are all of the same group! It's exciting time for Rare Disease.




Health Related Quality of Life Study: A Snapshot of Rare Disease Lives

People living with Rare Disease know they live rare lives. It's tough being the zebra in the room, especially because our doctors rarely look for zebras. Even when they find out we are rare, most have no ideas about the unique day to day challenges facing those of us with Rare Disease.

One major fact lies before most of us: we cannot count on a cure within our lifetimes. While new Rare Disease Collaborative Research models are starting to show promise, there are many unique challenges facing researchers working with rare disease.

Luckily, our Rare Disease community is learning fast, sharing resources, propping each other up as we create unique solutions for researchers in Rare Disease. The internet has opened up amazing possibilities for growth and organization including globally connected, free access, Bioregistries that Rare Disease research can access from anywhere in the world. In the past, patients were scattered over large areas making research activities costly and difficult.…

ACMCRN's Arachnoiditis Review is out! Rare Disease, Arachnoiditis, Chronic Pain

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This week's ACMCRN Arachnoiditis Review is out!


Don't miss this week's amazing Top 5 articles!
Our featured videos are listed too! Here's the top video in this edition! PMB Clawback PSA by iPain - 90 sec https://youtu.be/YBQjIad_WJo