Watch and share the official Rare Disease Day 2013 video! The sixth Rare Disease Day takes place on 28 February 2013. This year's slogan "Rare Disorders with...
Tags: 2013, 28, Day, Disease, Feb., More…Official, Rare, Video
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thanks Alan - the FB link wouldnt work for me but I used the embed code for direcy link on my FB page - much appreciated.
i have at least two rare disorders. In head there are no borders, in the web also not. It s only in the "real world" where there are always borders.
I have a Rare Disorder and I am Crossing Borders
I like the slogan for this year - about going beyond your boarders and need for international cooperation. I found this published research from China on pubmed, but I can't find any european/north american info to support it/build on it. If anyone has more info on the mechanism of how research is shared internationally - please post to me. Thank you!
2013 Feb 1;10(1):11-20.
Department of Neurology Affiliated Drum Tower Hospital of Nanjing University Medical School, 321 ZhongShan Road, Nanjing City, Jiangsu Province, 210008, PR China. email@example.com, firstname.lastname@example.org.
Hereditary spinocerebellar ataxia (SCA) is a devastating, incurable disease. Stem-cell-based therapies represent new promise for clinical research in neurology. The objectives of this study were to assess the feasibility, efficacy, and potential toxicity of human umbilical cord mesenchymal stem cells (UCMSCs) therapy in patients with SCA. Sixteen genomically diagnosed SCA patients were enrolled and received intravenous and intrathecal infusion of UCMSCs. Clinical, laboratory, and radiographic evaluations were conducted to assess the safety of UCMSC therapy. Efficacy was evaluated by the Berg Balance Scale (BBS) and International Cooperative Ataxia Rating Scale (ICARS) scores. Among the 16 cases, there were no serious transplant-related adverse events happened in 12 months follow-up. The majority of patients showed improved BBS and ICARS scores continuing for at least 6 months which indicated UCMSC therapy could alleviate SCA symptoms. This study suggested that UCMSC transplantation was safe and might delay the progression of SCA. This may represent a new therapeutic strategy for SCA and other genetic neurological diseases.
Thank you for posting that amazing video.
Our family is dealing with SCA-3 or Joseph Machado Disease as well as Potocki-Lupski Syndrome (PTLS). Please if anyone has good links/information - send post my way.
Thank you - God bless you all.
(.. so many errors in typing! and no possibility to correct.. i am ashamed..)
Thank you very much, Alan, for this video. It seems to be very characteristic for the situation of people with rare diseases.. sitting at home in the night, without help.. like these two children depicted..
Thanks also for infoming me/this forum about this event. I have contacted Prorare Austria which was founded in 2011;filled out a formulary where i could express my concerns regarding the situation of people with rare diseases in Austria (tool the situation of peopls with chronic graft versus host disease after allogeneic stem cell transplantation, which i am experiencing since 2008).Ataxia is new.
In Austria there will happen two events (in English on the link on the right side):
On Feb 28,2013 a school project in Innsbruck, Tyrol, Austria where students collect money for a research project on Rare Disease on the Childrens Clinics in Innsbruck " "Open Eyes, Colour Lives".. On the same day in Salzburg they will celebrate the Day of Rare Diseases, and in Vienna we will have a "Walk of the Rare Diseases" on March 2,2013.
i will try to participate.
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Acute Disseminated Encephalomyelitis (ADEM)
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