*  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/
*  Living with a Rare Disease: stories from patients and families
Living with a Rare Disease. Most rare diseases have no cure, so living with a rare disease is an ongoing learning experience ... The voice of rare disease patients in Europe. The international voice of people living with rare diseases, Rare Diseases ... 2017 marks the 20th anniversary of EURORDIS-Rare Diseases Europe.. The rare disease community, including all rare disease ... Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and ...
  https://www.eurordis.org/living-with-a-rare-disease
*  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/
*  NORD Launches Campaign to Educate State Legislators About Challenges of Living With Rare Diseases | SYS-CON BRASIL
The campaign is just one of many activities NORD will oversee as the national sponsor of Rare Disease Day in the U.S. Rare ... Patient Advocates and Supporters to Host State House Events for Rare Disease Day 2013 ... "It's very important for officials at the state level to understand what it's like to live with a rare disease," said NORD ... "Key decisions affecting the lives of rare disease patients and their families on issues such as newborn screening and medical ...
  http://br.sys-con.com/node/2480335
*  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/
*  Analyst says smart money is on drugs for certain orphan diseases - Medical Marketing and Media
... market potential and emotional pull play into the reasons this analyst writes that this category of orphan diseases is one to ... High prices for small-population disease treatments are not new to the rare-disease space, and drugs, like Alexion's Soliris, ... Rare-disease therapies have accounted for about a third of approvals of new molecular entities between 2007 and 2012, according ... But a recent report by Leerink Swann analyst Joseph Schwartz indicated that the future of rare disease research lies in ...
  http://www.mmm-online.com/channel/analyst-says-smart-money-is-on-drugs-for-certain-orphan-diseases/article/310234/?DCMP=EMC-MMM_WeeklyDigest
*  Future of Global Rare Disease Treatment Market by 2016 - 2024 | Medgadget
... of the global population suffer from a rare disease and half of the global population affected by rare diseases are ... for development of rare disease treatment. Mergers and acquisitions in rare disease treatment market are preferred by the ... and increasing awareness towards rare diseases. MEA is expected to hold least share in global rare disease treatment market due ... of rare diseases are caused due to genetic abnormality and are inherited for generations. Approximately 5 % of rare diseases ...
  https://www.medgadget.com/2017/01/future-of-global-rare-disease-treatment-market-by-2016-2024.html
*  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
*  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/
*  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
*  Rare Diseases | National Eye Institute
Diagram of Eye Rare Diseases that Affect the Eye Anophthalmia and Microphthalmia Bietti's Crystalline Dystrophy Behçet's ... Rare Diseases. Some eye diseases are rare. A rare disease is generally considered to have a prevalence of fewer than 200,000 ... NIH Rare Diseases Resources. *National Center for Advancing Translational Sciences (NCATS). *Genetic and Rare Disease ... NIH spotlights research for rare eye diseases during Rare Disease Day Posted on Feb 1, 2012 ...
  https://www.nei.nih.gov/health/rare/
*  Rare Diseases</span...
Rare diseases may not be common, but they are no less painful or difficult than conditions you've heard of. Learn about some ... Diseases & Conditions / Rare Diseases. Top 10 Rare Diseases We'll look at the top 10 rare diseases, some of which you may never ... Diseases & Conditions / Rare Diseases. What are the world's rarest diseases? What if you were the only person in the world with ... Diseases & Conditions / Rare Diseases. 10 Diseases Named After People Naming a disease after a person makes it more memorable ...
  https://health.howstuffworks.com/diseases-conditions/rare
*  Recurring blood blisters - Rare Diseases - MedHelp
Even Raynaud's disease needs an evaluation. For blood blisters, elevate the hand, give rest to the part, apply cold compresses ... Even Raynaud's disease needs an evaluation. For blood blisters, elevate the hand, give rest to the part, apply cold compresses ... Recurrent blood blisters may be found in diabetes and since you are having other symptoms also peripheral vascular disease ... Recurrent blood blisters may be found in diabetes and since you are having other symptoms also peripheral vascular disease ...
  https://www.medhelp.org/posts/Rare-Diseases/Recurring-blood-blisters/show/1511355
*  HON - List of rare diseases
Others rare diseases or genetic conditions with:. ORPHANET is a database dedicated to information on rare diseases and orphan ... HONselect/RareDiseases//index_de.html Letzte Änderung: 15 avril 2015 copyright HON 2015. ...
  https://www.healthonnet.org/HONselect/RareDiseases/index_de.html
*  Aegerion Pharma raises rare disease awareness
Home , Aegerion Pharma raises rare disease awareness. Aegerion Pharma raises rare disease awareness. Ira Kantor Thursday, ... a biopharmaceutical company focused on developing and commercializing drugs to treat debilitating and often fatal rare diseases ... Source URL: http://www.bostonherald.com/business/business_markets/2012/09/aegerion_pharma_raises_rare_disease_awareness ... resulting in elevated cholesterol levels that can lead to complications such as heart disease and stroke. ...
  http://www.bostonherald.com/print/1061161799
*  Orphan Drugs & Rare Diseases : Pharmaceuticals : All
Rare Diseases will provide an exclusive opportunity to network with these leading experts on not only rare diseases research ... Richard Philipson, Disease Area Head for Immuno / Inflammation, GlaxoSmithKline, Neurosciences MDC. *Rare disease ... Orphan Drugs & Rare Diseases. 8th October to 9th October 2012, London, United Kingdom. ... The call to treat rare diseases has become louder around the world in recent years than ever before. Supportive organisations ...
  http://www.smi-online.co.uk/pharmaceuticals/archive/10-2012/conference/orphan-drugs-rare-diseases
*  European Call on Rare Diseases - SNF
The ERA-Net for Research Programmes on Rare Diseases (E-RARE) aims at maximising the efficiency and impact of research on rare ... The E-Rare network launches its 10th call for funding transnational research projects on Rare Diseases. ... multi-omic integrated approaches for discovery of disease causes and/or functional validation in the context of rare diseases. ... diseases on a European scale.. The aim of the call is to enable scientists in different countries to build an effective ...
  http://www.snf.ch/en/researchinFocus/newsroom/Pages/news-171215-call-for-proposals-european-call-on-rare-diseases.aspx
*  What do I have? - 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/What-do-I-have/show/1897030
*  Trapped air in stomach - Rare Diseases - MedHelp
But if it is not relieved by these methods a check for severe gastritis, peptic disease and tracheo-esophageal fistula should ... But if it is not relieved by these methods a check for severe gastritis, peptic disease and tracheo-esophageal fistula should ... 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/Trapped-air-in-stomach/show/954835
*  Rare disease - Wikipedia
Rare Disease Act of 2002 Rare diseases: what are we talking about? "Useful Information on Rare Diseases from an EU Perspective ... ICD coding for rare diseases Health care rationing List of rare disease organisations Mystery Diagnosis Rare Disease Day ... Rare Diseases Information Center Database of rare diseases at Orphanet National Organization for Rare Disorders Rare diseases ... The European Organization for Rare Diseases (EURORDIS) also includes both rare diseases and neglected diseases into a larger ...
  https://en.wikipedia.org/wiki/Rare_disease