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All of the material provided on this site, such as text, treatments, dosages, outcomes, charts, patient profiles, graphics, photographs, images, advice, messages, forum postings and any other material submitted on this site are for informational purposes only and are not a substitute for professional medical advice or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your health never disregard professional medical advice or delay in seeking it because of something you have read on this site.
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In The News
August 2012
http://www.rebeccaevansam.com/rebecca-discusses-rare-diseases/
February 2012
[Guest post] Ataxia – a Rare Disease Day Post
November 2011:Living with Ataxia on WelshFocus
March 2010: Living with Ataxia on Race Online 2012
1/23/10: LivingWithAtaxia Featured on SavantMD.com
8/31/09: LivingWithAtaxia Mentioned on About.com
8/12/09: OrganizedWisdom.com's Favorite Ataxia Community OrganizedWisdom.com.
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Forum
A pan-European study: Signs of motor disorders can appear years before disease manifestation
Started by Alan Thomas in General. Last reply by Beryl Park 3 hours ago. 2 Replies 0 Likes
A pan-European study: Signs of motor disorders can appear years before disease manifestationThe scientists report these findings in the current online edition of "The Lancet Neurology". This pan-European study could open up new possibilities of…Continue
Tags: years, appear, before, disease, manifestation
Muscle Pain With FA
Started by serenity in General 19 hours ago. 0 Replies 0 Likes
Similar to Cher's discussion, just wanted to ask if anyone with FA experiences muscle pain?Continue
People who don't understand
Started by lisa1949 in General. Last reply by butterflyflyaway 18 hours ago. 2 Replies 0 Likes
I was horrified the other day to be told by a neighbour who suffers with Parkinsons and keeps pushing herself so hard she falls asleep at the drop of a hat, that I was pampering my self by resting. My OT has advised that the fatigue I suffer needs…Continue
Friends
Started by Punk in General. Last reply by Punk 8 hours ago. 17 Replies 4 Likes
After Cassie's diagnosis my wife and I were in a state of shock, but after finding this site I feel like I have made so many friends and I would like to thank you all from the bottom of my heart. You are a very special lot dealing with a difficult…Continue
Rare Genomics Podcast
The first run of our podcast on genetic disorders with our partner, RareGenomics, was a resounding success! You can listen to a recording of this podcast below, plus some bonus material from Dr. Perlman as she answers more questions about ataxia!
Part 1:
Part 2:
Don’t focus on your Disabilties, focus on the Possibilities
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Ben's Friends Partners with Rare Disease UK
Rare Disease UK is the national alliance for people with rare diseases and all who support them. Members include individual patients and family members, clinicians, health professionals, researchers and industry. Rare Disease UK is campaigning for the development and implementation of a national plan to facilitate research and improve access to services and support for people affected by rare diseases in the UK.
Ben’s Friends is elated to have such a strong partner in its campaign to provide support to every rare disease patient in the UK.
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Help spread the word about our newest communities by sharing on your Facebook wall: Acute Disseminated Encephalomyelitis, ADD, Amyloidosis, Disabilities, Ehlers-Danlos Syndrome, Fabry, Guillain-Barre Syndrome, Lyme Disease, Myositis, Narcolepsy, Nephrotic Syndrome, Sjogren's Syndrome, Traumatic Brain Injury, Von Willebrand's Disease.
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ModeratorScott Orn left a comment for Champ
Lori replied to Punk's discussion Contact the rich
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Top Discussions
| 1 |
Service DogsPosted by Jeannie Ball on May 18, 2013 |
| 2 |
What does my future hold??Posted by butterflyflyaway on May 17, 2013 |
| 3 |
Joint/Muscle Pain SCA6?Posted by Cher Macdonald on May 20, 2013 |
| 4 |
FriendsPosted by Punk on May 22, 2013 |
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"Thank you kindly. I need to talk and learn that I am not alone and share."
“Thank you kindly. I need to talk and learn that I am not alone and share.”- a member from Living With Ataxia - Online Support Group
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Patient Communities
Acute Disseminated Encephalomyelitis (ADEM)
ADHD/ADD
Adrenoleukodystrophy (ALD)
Amyloidosis
Arteriovenous Malformation (AVM)
Ataxia (International)
Ataxia (U.S.A.)
Atrial Septal Defect
Brain Aneurysms
Charcot Marie Tooth (CMT)
Chiari Malformation
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)
Crohn's Disease
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Ehlers-Danlos Syndrome
Erythromelalgia
Fabry
Fibromyalgia
Glossopharyngeal Neuralgia(GPN)
Guillain-Barre Syndrome (GBS)
Lupus
Lyme Disease
Multiple Myeloma
Myositis
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Nephrotic Syndrome
Primary Sclerosing Cholangitis (PSC)
Psoriatic Arthritis (PsA)
Sjogren's Syndrome
Synovial Sarcoma
Traumatic Brain Injury (TBI)
Trigeminal Neuralgia (TN)
Von Willebrand's Disease (VWD)
Other Rare Diseases
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Blog Posts
How rare is Ataxia?
Posted by Mary on May 3, 2013 at 8:25pm 17 Comments 3 Likes
Preparing For An Appointment With A New Doctor
Posted by Ben Munoz on April 27, 2013 at 5:57am 4 Comments 3 Likes
Finding a new doctor can be difficult, and very scary. Being prepared can make the whole experience much easier on you, and on the new doctor. Remember that the doctor works for YOU, and if you are…
Continue April 2013 Community Newsletter
Posted by Ben Munoz on April 24, 2013 at 11:00pm 6 Comments 0 Likes
Dear LivingWithAtaxia Family and Friends,
Our prayers go to those affected by the Boston Marathon bombing. We also hope that none of our members were directly affected by it in any way.
Those who have listened to Scott’s …
Continue
Baylor College of Medicine Article Featured Ben's Friends
Posted by Armando Abrero on April 16, 2013 at 9:30pm 0 Comments 0 Likes
Coping with a rare condition stretches our resiliency and, with a little help from friends, triumph through adversity.
The story of…
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