train.fastercures.org
Organization Profiles - T R A I N Central Station
http://train.fastercures.org/about/profiles
What is venture philanthropy? Research and Development System. Venture Philanthropy in the News. This first-of-its-kind inventory was designed to help potential collaborators better understand the landscape of nonprofit disease research foundations and engage in meaningful partnerships with them. Using a set of common metrics, it highlights key details about each organization's research portfolio, collaboration efforts, and financials. Last updated in June 2014, it profiles the 60 organizations in. Allia...
cordieliea.livejournal.com
cordieliea
http://cordieliea.livejournal.com/tag/alkaptonuria
BetOnMarkets Customer Survey Raises Money for Charity. Jan 17th, 2013 at 2:11 PM. The Directors of BetOnMarkets, the leading fixed-odds trading provider with over 300,000 customers worldwide, are delighted to announce that our recent online customer survey has raised a $2,870 for the AKU Society. AKU (short for Alkaptonuria) is a rare genetic disease also called Black Bone Disease. Jean-Yves Sireau, CEO of BetOnMarkets, said:. AKU is an ultra-rare genetic disease affecting one in 500,000 people. It i...
convergence2009.wordpress.com
Pigeon post – AKU Trustee needed | Blogging Convergence
https://convergence2009.wordpress.com/2013/05/28/pigeon-post-aku-trustee-needed
Pigeon post – AKU Trustee needed. Is a medical charity that seeks to find treatments and a cure to AKU, a rare genetic disease which leads to severe physical disability. It is an exciting time for the charity as they have just launched their first clinical trial for a new treatment having managed to raise 18 million. They have also created a new model for drug development that could radically change how wider medical research is carried out. AKU Society is looking for. And visit www.akusociety.org. Teens...
bhdresearch.scienceblog.com
May | 2015 | BHD Research
http://bhdresearch.scienceblog.com/date/2015/05
Your Resource for Birt-Hogg-Dubé Syndrome. Skip to primary content. Skip to secondary content. Monthly Archives: May 2015. The potential use of BH3-mimetics to overcome apoptosis-resistance in renal cell carcinoma. May 29, 2015. Renal cell carcinoma (RCC), as well as other solid tumours, can prove resistant to standard cancer treatments such as chemotherapy. One mechanism likely to play a role in this resistance is activation of HIF. In response to cell death signals BH3-only family members, such as BIM.
rdstaging.geneticalliance.uk
Supporters
http://rdstaging.geneticalliance.uk/supporters
What is a rare disease? Rare Disease UK (RDUK) has over 2,000 registered supporters including academics, clinicians, industry, individual members and patient organisations. For more information and to join RDUK please click here. Our industry supporters for 2016 are: Aegerion, Alexion, Amgen, Amicus Therapeutics, Bio Marin, Biogen, Chiesi, CSL Behring, Genzyme, GlaxoSmithKline, Healx, Novartis, Pfizer, PTC Therapeutics, Raptor, Roche, Shire, Sigma-Tau Rare Disease, SOBI, UCB and Vertex. CDH-UK (Congenita...
dnadigest.org
Testimonials - DNAdigest.org
http://dnadigest.org/testimonials-2
News & Articles. Genetic Clinic of the Future. What can I do to help? DNAdigest addresses a key issue of amassing a meta-genome for Homo sapiens sapiens. Data sequestered in private databases, be they academic or commercial, that is not accessible to all potential users contributes to the creation of private instances of the human genome that deny legitimate users the fullest sense of the genetic variation among humans. 8211; Hugh Young Rienhoff. Chairman and CEO AKU Society, www.akusociety.org. Solving ...
dsaku.de
Partner
http://www.dsaku.de/ueber-dsaku/partner
Um als kleiner Verein so professionell und effizient wie möglich unsere Ziele verfolgen zu können, haben wir ein Netzwerk von Partnern aufgebaut, mit deren Zusammenarbeit wir in der Lage sind durch Informationen und Versorgung sowohl im medizinischem als auch im sozialrechtlichem Bereich Hilfe für AKU-Patienten aller Altersgruppen zu leisten. Verein für angeborenen Stoffwechselstörungen. Die Allianz chronisch seltener Erkrankungen. DRL) ist der größte Verein Deutschlands und vertritt die Inter...In Cambr...
hgddatabase.cvtisr.sk
HGD homepage - HGD mutation database - Leiden Open Variation Database
http://hgddatabase.cvtisr.sk/variants.php?select_db=HGD&action=view_all
Homogentisate 1,2-dioxygenase (HGD). LOVD v.2.0 Build 36 [ Current LOVD status. Curator: Dr. Andrea Zatkova. View all (unique) PubMed references. In the HGD database. October 24, 2010. June 28, 2016. Submit a sequence variant. Coding DNA reference sequence. For describing sequence variants. Total number of unique DNA variants reported. Total number of individuals with variant(s). Total number of variants reported. Subscribe to updates of this gene. More data can be downloaded here:. Summary of all sequen...
thelaurencurrietwilightfoundation.org
The Lauren Currie Twilight Foundation
http://www.thelaurencurrietwilightfoundation.org/blog
Black & Red 2016 / Five – PR launch. The Nicest Job in Britain – charity partner. Summer 2016 at LCTF. Small Charity Week 2016. HOPE – Helping Other Patients Everywhere. On Rheumatology 2016 – SECC, Glasgow. On Rheumatology 2016 – SECC, Glasgow. On Rheumatology 2016 – SECC, Glasgow. On Glasgow Support Group. On Eating Well with Vasculitis – New Booklets Available. August 22, 2016. Raising awareness is hugely important. Vasculitis is rare and can be difficult to diagnose so increasing knowledge and un...
rareconnect.org
Alkaptonuria (AKU), the Community - RareConnect
https://www.rareconnect.org/en/community/alkaptonuria-aku
Connecting rare disease patients globally. Search and join a community. Search or start a discussion. Living with a rare disease. Discuss with other patients. Welcome - Alkaptonuria (AKU) Community. What is Alkaptonuria (AKU)? Alkaptonuria (AKU) is a rare autosomal recessive disease, affecting tyrosine metabolism. Patients accumulate homogentisic acid at 2000 times the normal rate, resulting in cartilage degradation and symptoms similar to early-onset osteoarthritis. Doctors hardly ever want to help.
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