-
7 months ago
HSP Cyclist in Denmark
Video is from Danish TV2.
English explanation:
First part: Alan Schmidt is a professional road racer and part of the Danish national team for han...
320 views
robpleticha
uploaded
-
-
10 months ago
Hereditary spastic paraplegia documentary
This is for Science Class! We are bad at pronouncing things but we don't care it means the same thing. new and improved!!
MidnightMillie • 2,307 views
robpleticha
commented:
-
10 months ago
Hereditary Spastic Paraplegia, Leg Spasm 2
Had my camera handy for yet another spasm but on the right calve this time. This vid is a bit longer than the previous but as before, it's all abou...
Wiamond • 1,911 views
robpleticha
commented:
New online community for people living with HSP. In 5 languages with a forum translated on demand by humans. Check it out at rarediseasecommunities . org
Developed by EURORDIS, NORD, and other international HSP groups.
-
10 months ago
Hereditary Spastic Paraplegia, Leg Spasm
Howdy's people of the interweb, I'm Chad Stiltner and I've been living with HSP since 1998 but in the last year my ability to walk has diminished g...
Wiamond • 1,783 views
robpleticha
commented:
New online community for people living with HSP. In 5 languages with a forum translated on demand by humans. Check it out at rarediseasecommunities . org
Developed by EURORDIS, NORD, and other international HSP groups.
-
11 months ago
Living with EB
EB is an extremely rare skin disorder. But for children like 9-year-old Sarah Oliveira, who suffer from severe cases, the disorder is debilitating....
tvjersey • 13,630 views
robpleticha
commented:
New Online Community for people affected by EB. In 5 languages, developed by NORD, EURORDIS, and DebRA Int.
Google Rare Disease Communities to find it, come share your story
-
11 months ago
Epidermolysis Bullosa (EB) Awareness Celebrities Chip In
Celebrities like Courtney Cox, Eva Longoria, Orlando Bloom, Jessica Simpson and Gwen Stefani chip in to raise awareness for Epidermolysis Bullosa a...
PrincessSilvia • 7,452 views
robpleticha
commented:
New Online Community for people affected by EB. In 5 languages, developed by NORD, EURORDIS, and DebRA Int.
Google Rare Disease Communities to find it, come share your story
-
11 months ago
A rare disease national plan for Croatia
Vlasta Zmazek, President of the Croatian National Alliance for Rare Diseases (also president of DEBRA) speaks about organising a conference on a na...
eurordis • 67 views
robpleticha
liked
-
11 months ago
-
11 months ago
Vivre avec le syndrome Muckle Wells (CAPS - Cyropyrin Associated Periodic Syndromes)
Paul Rivière, président de l'association AMWS/CINCA, et malade atteint du syndrome de Muckle Wells, témoigne.
Lien envers l'association AMWS/CINA ...
eurordis • 1,282 views
robpleticha
liked
-
1 year ago
AKU A Story of Hope
Alkaptonuria is a debilitating and rare genetic disease that affects the cartilage and bone, slowly destroying them. Adults with the disease often ...
findAKUre • 381 views
robpleticha
commented:
New Online Community in 5 languages for people living with AKU.
Created by EURORDIS, NORD, and international AKU patient groups.
Check it out by Googling Rare Disease Communities
-
1 year ago
AKU The Forgotten Orphan
Alkaptonuria is a debilitating and rare genetic disease that affects the cartilage and bone, slowly destroying them. Adults with the disease often ...
findAKUre • 395 views
robpleticha
commented:
New Online Community in 5 languages for people living with AKU.
Created by EURORDIS, NORD, and international AKU patient groups.
Check it out by Googling Rare Disease Communities
-
1 year ago
Garrett: The Boy Beneath The Bandages. WINNER of the Rare Disease Day 2010 Video Contest.
Epidermolysis Bullosa, or EB, is a rare genetic skin disorder the the majority of people have never heard of, yet it affects 100,000 children acros...
rarediseaseday • 19,860 views
robpleticha
commented:
New Online Community in 5 languages for people living with EB. Developed by EURORDIS, NORD, and International EB patient organizations.
Check it by Googling Rare Disease Communities
-
1 year ago
Epidermolysis Bullosa clinic visit
Epidermolysis Bullosa, or EB, is a rare genetic skin disorder the the majority of people have never heard of, yet it affects 100,000 children acros...
rarediseaseday • 5,278 views
robpleticha
commented:
New Online Community in 5 languages for people living with EB. Developed by EURORDIS, NORD, and International EB patient organizations.
Check it by Googling Rare Disease Communities
-
1 year ago
Mystery Diagnosis -- Behcet's Disease, Part 1 of 2
Mystery Diagnosis -- Behcet's Disease, Part 1 of 2
J Zeis's 17-year search for a Behcet's diagnosis. Part 2 is here: http://www.youtube.com/watch?v...
jzeis • 35,791 views
robpleticha
commented:
New Online Community in 5 languages for people living with Behcet's. Developed by EURORDIS, NORD, and European Behcet's patient organizations.
Check it by Googling Rare Disease Communities
-
1 year ago
BEHCET'S DISEASE - Explained
A full and very educational piece on Behcet's Disease that explains this rare, debilitating autoimmune disease. Features patient stories, Sanya Ric...
AmericanBehcets • 40,340 views
robpleticha
commented:
New Online Community in 5 languages for people living with Behcet's. Developed by EURORDIS, NORD, and European Behcet's patient organizations.
Check it by Googling Rare Disease Communities
-
1 year ago
Living with Behcet's Syndrome
After being told she would never be able to have children due to the debilitating Behcet's Syndrome, Larraine Andrews explains how she overcame the...
mmbarratt1 • 4,533 views
robpleticha
commented:
New Online Community in 5 languages for people living with Behcet's. Developed by EURORDIS, NORD, and European Behcet's patient organizations.
Check it by Googling Rare Disease Communities
-
1 year ago
Sunna Valdis AHC episode Comparison 2008-2011.wmv
In 2008 Sunna was having up to 50 episodes a day. At that time she was hospitalized. In 2011 we did things differently, when she started to have e...
siggijo70 • 417 views
robpleticha
liked
-
1 year ago
Work for People with Prader Willi Syndrome
Click on the CC in the lower right hand corner of the video window for English Subtitles.
1,189 views
robpleticha
uploaded
New online community for people living with HSP. In 5 languages with a forum translated on demand by humans. Check it out at rarediseasecommunities . org
Developed by EURORDIS, NORD, and other international HSP groups.