*  From mice to yeast: new network to use model organisms to study rare disease - Healthcanal.com : Healthcanal.com
Rare diseases are usually not the focus of research laboratories, which greatly limits our ability to discover effective ... Home Medical Breakthroughs From mice to yeast: new network to use model organisms to study rare disease ... "Our efforts will build on Canada's proven leadership in rare disease gene discovery through national engagement," said Hieter, ... We can gain insight into most rare human diseases by analyzing the equivalent genes and pathways in experimental organisms, ...
  https://www.healthcanal.com/medical-breakthroughs/57477-from-mice-to-yeast-new-network-to-use-model-organisms-to-study-rare-disease.html
*  The National Alliance for Caregiving have Launched a Survey for Caregivers for Persons with Rare Disease - Special Needs...
Guided by its mission to eliminate the challenges of rare disease, Global Genes® is a leading rare disease patient advocacy ... We want to quantify the impact that a rare disease can have, not just on the person facing the disease, but on the community of ... To study the impact of rare disease on family caregivers, the National Alliance for Caregiving, in partnership with rare ... The National Alliance for Caregiving have Launched a Survey for Caregivers for Persons with Rare Disease. What's Happening ...
  http://www.eparent.com/whats-happening/national-alliance-caregiving-launched-survey-caregivers-persons-rare-disease/
*  orphan disease
More On: orphan disease, Orphan diseases, rare disease Eight percent of Americans name apples as their favorite fruit. About 5 ... More On: orphan disease, Orphan diseases, progeria, rare disease Trial participant Megan Nighbor (now age 12) in 2008 (courtesy ... More On: DF/CHCC, Fanconi anemia, gene therapy, iPS cells, orphan disease, Orphan diseases, rare disease, Regenerative medicine ... More On: CTI, drug development, Nurjana Bachman, orphan disease, Orphan diseases, pediatrics, Pfizer, rare disease, ...
  https://vector.childrenshospital.org/tag/orphan-disease/
*  Rare diseases: a public health priority
The voice of rare disease patients in Europe. The international voice of people living with rare diseases, Rare Diseases ... rare diseases are rare (defined as less than 1 person in 2,000 in Europe), but rare disease patients are many. ... The rare disease community will be grateful to you for helping it put forward rare diseases as a much needed public health ... Clarifying the concept of rare diseases. To clarify the concept of rare diseases as a public health issue, we took the ...
  https://stars.eurordis.org/content/public-health-priority
*  EURORDIS - The Voice of Rare Disease Patients in Europe
The voice of rare disease patients in Europe. The international voice of people living with rare diseases, Rare Diseases ... Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and ... The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences ... A social network of rare disease communities led by EURORDIS in partnership with leading disease-specific patient groups. ...
  https://stars.eurordis.org/content/rareconnect-0
*  Health Commissioner calls for national plans to tackle rare diseases - EURACTIV.com
The EU considers a disease rare when it affects fewer than one in 2,000 citizens. Over 6,000 different rare diseases have been ... is Rare Disease Day. The date has been chosen to raise awareness on the impact that rare diseases have on patients and their ... and several companies companies developing drugs for rare diseases, clinical trials and approvals for drugs for rare diseases ... Rare Disease Day is held on the last day of February each year, a rare day, and seeks to raise awareness of the impact that ...
  http://www.euractiv.com/section/health-consumers/news/health-commissioner-calls-for-national-plans-to-tackle-rare-diseases/
*  FDA To Provide $2 Million In Rare Disease Study Funding - Xtalks
The goal of natural history studies of rare diseases is to gain a better understanding of rare disease progression - ... "As we observe Rare Disease Day today, we are excited to announce a program that will bridge some of this funding gap and ... "Rare diseases are often poorly understood," said Dr. Gayatri Rao director of the FDA's Office of Orphan Products Development, ... There are an estimated 7,000 different rare diseases that affect patients in the US. The funding will be made available to ...
  https://xtalks.com/fda-to-provide-rare-disease-study-funding-251/
*  UC Irvine - Faculty Profile System
RR-03-008 09/01/03 - 08/31/09, Renewal 09/01/09- 8/31/14 NIH/NICHD Rare Disease Clinical Research Network: Rare disease CRC for ... Disease and Familial Alzheimer's Disease: Contrasts and Overlaps. Alzheimer's Disease / Book 1. 2011, Intechopen Publishing ( ... Kimonis has established UC Irvine as a RDRCN (Rare Diseases Clinical Research Network) site for the Natural History study of ... Alabama) Natural History Study of Prader-Willi Syndrome & Early-onset Morbid Obesity 09/01/10 - 08/31/11 NIH/NICHD Rare Disease ...
  https://www.faculty.uci.edu/profile.cfm?faculty_id=5799
*  News | Page 4- Rare Disease Report
... and conference coverage related to orphan drugs and rare diseases. Our mission is to bring the rare disease community closer ... Rare Disease Report is an independent voice for the rare disease community. We provide medical, business, regulatory, advocacy ... FDA Grants Approval to Zelboraf for Certain Patients with Rare Blood Disease ... Sprycel Approval Expanded to Include Treatment of Children with Rare Chronic Myeloid Leukemia Variation ...
  http://www.raredr.com/news?p=4
*  New Angle on Rare Lung Disease May Improve Quality of Life for Patients - University of Houston
Human Performance study is investigating how physical activity impacts quality of life of those living with a rare lung disease ... New Angle on Rare Lung Disease May Improve Quality of Life for Patients. Collaborative Effort Pairs UH with UT-Health ... New Angle on Rare Lung Disease May Improve Quality of Life for Patients ... "There are maybe 100 researchers studying this disease in the country and about 1,500 patients in the U.S. with the disease that ...
  http://uh.edu/news-events/stories/7%2021%20HHP%20LAM.php
*  Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 March | Northern Ireland Rare Disease Partnership
Rare Disease Day is coming ! This year, we are looking forward to welcoming you to the fourth Joint North South Rare Disease ... Rare Disease Information Survey: We Want Your Feedback! * Rare Disease Day 2018: Joint North South Conference, Riddel Hall, 5 ... Rare Disease Implementation Plan, Uncategorized and tagged #strongertogether, conference, Rare Disease Day, research. Bookmark ... The Theme for this year's Rare Disease Day is Research; and the Joint North South Conference will focus on:. *Rare Disease and ...
  http://www.nirdp.org.uk/rare-disease-day-2018-joint-north-south-conference-riddel-hall-5-march/
*  FDA Grants More than $30 Million to Rare Disease Community
For more on research grants being awarded throughout the rare disease community, follow Rare Disease Report on Facebook and ... "Given the often-small number of patients facing certain rare diseases, there can be limited resources devoted to researching ... "We believe these important studies will provide key information about how these rare diseases develop and progress and can ... FDA Grants More than $30 Million to Rare Disease Community. OCTOBER 06, 2017 ...
  http://www.raredr.com/news/fda-grants-30-million-to-rare-disease
*  Orphanet Journal of Rare Diseases | Articles
Orphanet Journal of Rare Diseases is an open access, online journal that encompasses all aspects of rare diseases and orphan ... The journal publishes high quality reviews solicited from experts in the field and also considers research on rare diseases and ... the international portal for rare diseases and orphan drugs, ... Fabry disease and incidence of cancer Fabry disease is an X- ... Measuring what matters to rare disease patients - reflections on the work by the IRDiRC taskforce on patient-centered outcome ...
  https://ojrd.biomedcentral.com/articles?searchType=journalSearch&sort=PubDate&page=2
*  Crowdfunding for Cystic Fibrosis and Other Pediatric Rare Diseases Research Projects
In our case, we are focused on drug repositioning for rare diseases. At the very present we are running a crowdfunding campaign ... to raise funds to start new scientific research projects in 5 pediatric rare diseases (diseases ... Drug repositioning is the process of applying therapeutics, which already exist, towards new diseases. ... In our case, we are focused on drug repositioning for rare diseases. At the very present we are running a crowdfunding campaign ...
  http://forums.cysticfibrosis.com/showthread.php/155185-Crowdfunding-for-Cystic-Fibrosis-and-Other-Pediatric-Rare-Diseases-Research-Projects?s=4b0456657e03f2c2b5fad500120b49ec&p=1055147
*  Princesses' lives: Opening ceremony of meeting on rare diseases
Crown Princess Letizia attended the opening ceremony of the 2nd Meeting on Rare Diseases and Disability heldin Mahon, Menorca, ...
  http://princesseslives.blogspot.com/2013/02/opening-ceremony-of-meeting-on-rare.html
*  Orphan diseases : new hope for rare medical conditions (eBook, 2002) [WorldCat.org]
... new hope for rare medical conditions. [Wendy B Murphy; Baker & Taylor, Inc.] -- Looks at rare diseases, such as Tay-Sachs, ... Rare diseases. a schema:Intangible ;. schema:name "Rare diseases"@en ;. .. ... Rare diseases. a schema:Intangible ;. schema:name "Rare diseases"@en ;. .. ... rare bone and connective tissue disorders."@en ;. schema:description "Looks at rare diseases, such as Tay-Sachs, cystic ...
  http://www.worldcat.org/title/orphan-diseases-new-hope-for-rare-medical-conditions/oclc/58534665
*  Genetic and Rare Diseases Information Center (GARD) - an NCATS Program | Providing information about rare or genetic diseases.
Diseases expand submenu for Diseases * Browse A-Z * Find Diseases By Category expand submenu for Find Diseases By Category * ... contact gard Office of Rare Disease Research Facebook Page Office of Rare Disease Research on Twitter ... The Genetic and Rare Diseases Information Center (GARD) is a program of the National Center for Advancing Translational ... Genetic and Rare Diseases Information Center (GARD) - PO Box 8126, Gaithersburg, MD 20898-8126 - Toll-free: 1-888-205-2311 ...
  https://rarediseases.info.nih.gov/
*  Necrotizing Fasciitis | Features | CDC
Although the media commonly calls it a "flesh-eating infection," more than one type of bacterium can cause this rare disease. ... While Rare, Some People Are More Likely to Get Necrotizing Fasciitis. Necrotizing fasciitis is rare. Your chances of getting it ... National Center for Immunization and Respiratory Diseases, Division of Bacterial Diseases. *Page maintained by: Office of the ... The first line of defense against this disease is strong antibiotics given through a needle into a vein (IV antibiotics). ...
  https://www.cdc.gov/Features/NecrotizingFasciitis/
*  Behçet's Syndrome - NORD (National Organization for Rare Disorders)
NORD's Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. ... with the help of rare disease medical experts.. If you are seeking information about a rare disease that is not in this ... RareConnect offers a safe patient-hosted online community for patients and caregivers affected by this rare disease. For more ... Unlike most diseases which are classified as a vasculitis, involvement of the kidneys or peripheral nerves is very rare. ...
  https://rarediseases.org/rare-diseases/behcets-syndrome/
*  Autosomal Dominant Tubulo-Interstitial Kidney Disease - NORD (National Organization for Rare Disorders)
NORD's Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. ... with the help of rare disease medical experts.. If you are seeking information about a rare disease that is not in this ... Home / For Patients and Families / Rare Disease Information / Autosomal Dominant Tubulo-Interstitial Kidney Disease ... Unlike the other types of the disease (uromodulin kidney disease or disease due to renin mutations), patients with MUC1 ...
  https://rarediseases.org/rare-diseases/autosomal-dominant-interstitial-kidney-disease/
*  Identifying rare diseases - European Commission
Orphanet is the most important database in the EU for rare diseases and orphan drugs for the general public. It contains ... Other databases on rare diseases. The US Office of Rare Diseases (ORD) was established in 1993 within the Office of the ... Diagnosing Rare Diseases. Rare diseases (RD) are still poorly known both by the general public and by most health professionals ... The Swedish National Board of Health and Welfare is developing a database on rare diseases. Rare diseases are defined as: " ...
  https://ec.europa.eu/health/rare_diseases/orphanet/identification_en
*  HON - List of Rare Diseases
Others rare diseases or genetic conditions with:. ORPHANET is a database dedicated to information on rare diseases and orphan ... Glycogen Storage Disease Type I. Glycogen Storage Disease Type II. Glycogen Storage Disease Type IV. Glycogen Storage Disease ... HONselect/RareDiseases/index.html last modified: Dec 12 2017 copyright HON 2017. ...
  http://www.hon.ch/HONselect/RareDiseases/index.html
*  crps - Rare Diseases - MedHelp
... condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or ...
  https://www.medhelp.org/posts/Rare-Diseases/crps/show/1397645
*  CIPA Disease - Rare Diseases - MedHelp
CIPA Disease. I am looking for help for two little kids in Morocco. They have CIPA. It is unheard of in Morocco. They lost ... condition or disease; or a recommendation for a specific test, doctor, care provider, procedure, treatment plan, product, or ...
  http://www.medhelp.org/posts/Rare-Diseases/CIPA-Disease/show/778421
*  Today is Rare Disease Day
Rare Disease Day is meant to draw attention for the approximately 7000 diseases with fewer than 200,000 patients. - David Sell ... They are rare diseases and today is Rare Disease Day.. In the United States, a rare diseases is generally defined as one that ... Today is Rare Disease Day Updated: February 29, 2012 - 6:52 AM EST * ... But rare diseases are not exempt from the national debate on health care costs. Because there are few patients - and often few ...
  http://www.philly.com/philly/blogs/phillypharma/Today-is-Rare-Disease-Day.html