Rare. Medical search. Frequent questions

This report presents progress made in implementing resolution WHA70.12 (2017) on cancer prevention and control in the context of an integrated approach, on and access to health products for rare and orphan diseases1 (part A) and in implementing resolution WHA72.8 (2019) on improving the transparency of markets for medicines, vaccines, and other health products (part B). (who.int)

There are nearly 7,000 rare diseases. (medlineplus.gov)
There are approximately 7,000 rare diseases and 25-30 million Americans are affected by these rare disorders. (utah.gov)

Gastrointestinal hamartomatous polyposis syndromes are rare, autosomal dominant disorders associated with intestinal and extraintestinal tumors. (medscape.com)
While individuals with certain disorders may be rare, the total number of people with a rare disease is large. (utah.gov)
Background: Fahr's syndrome (or Fahr's disease) is a rare idiopathic degenerative disorder, characterized by bilateral symmetrical intracranial calcification and manifested as movement disorders, dementia and other behavioural disturbances. (who.int)

With the world's largest undeveloped deposits of rare-earth minerals, Greenland has the potential to become a world leader in producing the materials essential to high-demand products like smartphones and military hardware like the F-35 fighter jet. (foreignpolicy.com)
China now produces nearly all of the world's supply of rare earths, which are crucial for a wide range of technologies , including hard drives, solar panels, and motors for hybrid vehicles. (technologyreview.com)
Molycorp purchased the mine -- once the world's largest producer of rare earths -- from Chevron in 2008 and was able to generate $7.1 million in sales the following year by processing rare earths from existing stocks. (zdnet.com)
We aspire to be the world's leading innovator in rare disease by pioneering science that has a profound impact on the lives of underserved patient populations. (pfizer.com)

Rare earths include 17 elements, such as terbium, which is used to make green phosphors for flat-panel TVs, lasers , and high-efficiency fluorescent lamps. (technologyreview.com)
Alternatives to rare earths exist for some technologies. (technologyreview.com)
As automakers explore alternative motors, researchers in the U.S. and elsewhere are also trying to devise replacements for rare-earth materials, and political efforts are advancing to boost supplies of rare earths from outside of China. (technologyreview.com)
And while rare earths can be found all over the world, China produces 97 percent of them. (zdnet.com)
Companies stopped mining rare earths by 2003, opting instead to buy them on the cheap from China -- and a monopoly was born. (zdnet.com)
China curbed exports of rare earths several years ago and has maintained quotas ever since. (zdnet.com)
However, the company's fortunes would change as China instituted even stricter quotas and blocked shipments of rare earths to Japan altogether over a diplomatic dispute. (zdnet.com)

A rare disease is one that affects fewer than 200,000 people in the United States. (medlineplus.gov)
The US Food and Drug Administration (FDA) defines a rare disease as occurring in less than 200,000 people in the United States. (medscape.com)
Obviously, such conditions as asthma or diabetes wouldn't qualify as rare diseases because many more than 200,000 people are affected with these conditions. (medscape.com)
In the United States, diseases that each affect less than 200,000 people are called "rare diseases. (medlineplus.gov)

Rare Diseases, Genomics and Public Health: An Expanding Intersection (February 17, 2016) Rare Disease Day is celebrated on the last day of February each year. (cdc.gov)

According to the Global Genes organization, eight out of ten rare diseases are caused by a faulty gene, yet it takes an average of 4.8 years to arrive at an accurate diagnosis. (forbes.com)
Other examples of AI in the diagnosis of rare genetic diseases can be found elsewhere. (forbes.com)
Any cancer diagnosis can leave you feeling anxious and overwhelmed but when you have been diagnosed with a rare or less common cancer it can be particularly challenging and you may feel especially vulnerable and isolated. (cancer.org.au)
Safe, effective, quality-assured and affordable vaccines, medicines, medical devices, in vitro diagnostics and assistive products are necessary for the prevention, diagnosis and treatment of cancer and other noncommunicable diseases such as diabetes, and rare and orphan diseases, as well as the monitoring, rehabilitation and palliative care of individuals with these conditions. (who.int)

Please note that NORD provides this information for the benefit of the rare disease community. (rarediseases.org)
NORD advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. (rarediseases.org)
NORD Rare Disease Centers of Excellence are diagnosing and treating thousands of rare disease patients. (rarediseases.org)
NORD works with partners in the patient community, government, academia, and industry who share the ultimate goal of identifying, treating, and curing rare diseases. (rarediseases.org)
The mission of NORD is to improve the health and well-being of people with rare diseases by driving advances in care, research and policy. (rarediseases.org)
NORD helps drive more effective government policies by elevating the voice of the rare disease community. (rarediseases.org)

The Utah Rare Disease Advisory Council (RDAC) was formed under HB 106 during the 2020 legislative session of the Utah Legislature (Utah code 26-1-41). (utah.gov)

These numbers may seem relatively small but collectively rare and less common cancers account for half of all cancer deaths. (cancer.org.au)
In addition, we have developed a booklet, Understanding Less Common Cancers: a guide for people with cancer, their families and friends to help people better understand rare and less common cancers. (cancer.org.au)
Many cancers are developing into rare diseases. (medscape.com)

For three weeks, China has blocked shipments of rare-earth minerals to Japan, a move that has boosted the urgency of efforts to break Beijing's control of these minerals. (technologyreview.com)
In response to China's dominance in production, researchers are developing new materials that could either replace rare-earth minerals or decrease the need for them. (technologyreview.com)
To be clear, the U.S. didn't run out of rare earth minerals. (zdnet.com)
Molycorp has continued to expand its business with its $17 million purchase of Santoku America and an $89 million acquisition of Estonia's AS Silmet , a company that also converts raw materials into rare earth minerals for finished products. (zdnet.com)

While referred to as "rare" due to the smaller size of individual patient populations, rare diseases are collectively common and their burden on society is staggering. (pfizer.com)
There are thousands of diseases that are individually rare but collectively common. (cdc.gov)

There are over 7,000 known rare diseases that affect approximately 400 million people worldwide. (pfizer.com)
The current estimates from the National Institutes of Health and others are that there are more than 7000 rare diseases that affect 8%-10% of the population. (medscape.com)

In celebration of Rare Disease Day 2022, we reprint excerpts of four previous blogs. (cdc.gov)

Donovanosis is also rare in the U.K. But it's common in some tropical areas, including parts of India, Papua New Guinea, the Caribbean, central Australia and southern Africa, according to the Centers for Disease Control and Prevention . (livescience.com)

The last time I was this excited was the first time I picked up a controller and played a game from Rare,' said Ed Fries, vice president of Xbox Game Content at Microsoft . (ign.com)

Some rare tumors are made up of more than one type of tissue or are very different from other known types of rare solid tumors, so we have grouped them here. (cancer.gov)

As a tech-hungry world gobbles up rare-earth elements, researchers are adapting bacteria that can isolate and purify the metals in the absence of harsh chemicals. (nature.com)
Several companies are developing platforms that harness AI as a means to identify genetic variants at the roots of rare diseases, while medical researchers and practitioners are using these platforms or developing their own. (forbes.com)
In the U.S., the Chinese dominance of rare-earth mineral production has prompted a surge of funding focused on developing permanent magnets that use less, if any, rare-earth materials, such as nearly $7 million from the Advanced Research Projects Agency for Energy (ARPA-E). In one of these projects, University of Nebraska researchers are working to enhance permanent magnets made with an alloy iron and cobalt, or FeCo. (technologyreview.com)
Working alongside the Nebraska researchers in the same ARPA-E program, researchers at the University of Delaware are advancing nanocomposites that use far less of the valuable rare-earth materials, but that have been shown theoretically to generate magnetic strengths twice as powerful as today's best permanent magnets. (technologyreview.com)
Assist researchers throughout the world better understand and treat rare diseases by enrolling in our registry and sharing your experiences. (rarediseases.org)

Collectively, people living with a rare disease represent one of the largest underserved patient communities in the world, with only 5% of known rare diseases having one or more approved treatments. (pfizer.com)
Now, we're leading the way in an effort to deliver a new generation of breakthrough treatments across several modalities - small molecule, large molecule/monoclonal antibodies (mAbs), gene therapies and even devices - to potentially unlock the promise of science for the millions with rare diseases for whom the current standard of care falls short. (pfizer.com)
RDACs give stakeholders an opportunity to make formal recommendations to state leaders on critical rare disease issues including the need for increased awareness, diagnostic tools and access to affordable treatments and cures. (utah.gov)
For example, states play a critical role in ensuring rare disease patients have access to the health care providers, services and treatments they need to thrive, as well as the design of their Medicaid program benefits and regulation of some health insurance plans. (utah.gov)
Researching and developing new treatments for rare diseases is time consuming, complex, and often expensive. (medlineplus.gov)

Neodymium (shown here) is one of the rare-earth elements that are key to making very strong magnets for compact electric motors. (technologyreview.com)

In this post, we explore how new research on rare genetic diseases is contributing to our understanding of COVID-19 occurrence and outcomes and discuss potential clinical and public health implications. (cdc.gov)

The chronic degenerative condition related to Rare Diseases (DR) is permeated by complex social processes and access to health, whose understanding requires evaluation from the perspective of affected patients. (bvsalud.org)

Rare-earth elements include those in the lanthanide series - those with atomic numbers from 58 to 71, usually shown as a pop-out beneath the main periodic table - as well as the group 3 transition metals scandium and yttrium. (nature.com)
Located in the Rare Book Room on the second floor, these materials must be requested at the Main Circulation Desk. (palomar.edu)

REEgen's bacterial 'soup' dissolves ground-up rocks, waste electronic components and other solids that contain rare-earth elements - metals that have valuable conductive, magnetic and fluorescent properties and that are used in everything from mobile phones to wind turbines. (nature.com)
Rare earth metals are used in just about every modern-day and cleantech device including hybrid cars, cell phones, laptops and numerous defense technologies. (zdnet.com)

I hope this information is helpful to you when you start thinking about your patients, but also when you start hearing about rare diseases and the advances that are taking place in the field. (medscape.com)

Adult Colocolic Intussusception: A Rare Case of Intestinal Obstruction. (bvsalud.org)
Colocolic intussusception is a rare cause of intestinal obstruction in adults where a high suspicion index is of paramount importance, especially considering that most of the diagnoses are made at surgery . (bvsalud.org)

In 2021, a 20-year-old limited edition expression of Eagle Rare Bourbon Whiskey at 101 proof was released for $2,000 a bottle. (wikipedia.org)

WASHINGTON, June 28, 2018 - Previously unseen and historically significant home movie footage of President Franklin Roosevelt walking at the 1935 White House Easter Egg Roll-made available by the National Archives and the Franklin D. Roosevelt Presidential Library and Museum-offers a rare glimpse into the life of the former chief executive. (archives.gov)
Cellar master Régis Camus chose this summer to put on the market the 2008 vintage of the prestige cuvée known as Rare Champagne, once a special tête de cuvée bottling produced only in exceptional years under the Piper-Heidsieck label before splitting off to become a brand in its own right in 2018. (decanter.com)

Disease advocacy groups, rare disease organizations, and genetics clinics may help you to find one. (medlineplus.gov)
We provide information about rare diseases, patient organizations and other resources. (rarediseases.org)
Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. (rarediseases.org)
Patient advocacy organizations play a vital role in helping people with rare diseases live their best and fullest lives. (rarediseases.org)

Narrow spectral holes in rare earth ion crystals not only give a narrow transition spectrum, but also a slow light effect. (lu.se)

Our current portfolio spans four therapeutic areas, including 1) rare hematology, 2) rare endocrine/metabolic, 3) rare neurology and 4) rare cardiology. (pfizer.com)
Phenylketonuria (the metabolic disorder that we screen newborns for) is also considered a rare disease. (medscape.com)

The comparison of people with schizophrenia and healthy people reveals that the former are far likelier to possess extremely rare gene mutations. (newscientist.com)
The difference was even more striking among a second group of patients, who developed schizophrenia as children - a full 20% possessed rare gene deletions or duplications. (newscientist.com)
However, Ben Packard, a geneticist at the University of Edinburgh, says the study agrees with recent findings that rare gene deletions and duplications might cause autism. (newscientist.com)

At Pfizer, we believe that people living with a rare disease, along with the untold number of family members and caregivers who support them, deserve more. (pfizer.com)

People with schizophrenia may have the disease because they are unlucky enough to end up with an extremely rare combination of genes, according to a genetic study of the devastating illness. (newscientist.com)

Rare diseases are developing the therapeutic model that will eventually be applied to the general field of medicine. (medscape.com)

It even offers a glimpse at a Zeppelin flying over the White House, which is really rare footage in its own right. (archives.gov)

citation needed] The Sazerac Company, an American family-owned producer and importer based in New Orleans, Louisiana, and the parent company of five distilleries, acquired Eagle Rare from Seagram in March 1989. (wikipedia.org)

This is part of the reason why 30% of children with a rare disease won't live to see their fifth birthday. (forbes.com)
Carter also said that acquiring rare scenes from an Easter Egg Roll at the White House-a tradition dating back to April 22, 1878, when President Rutherford B. Hayes opened the White House grounds on Easter Monday to children who wanted to roll eggs-offered a unique and fresh perspective. (archives.gov)
Thousands of children in the Midwest got a rare snow day off school Friday as a winter storm moved through the Great Lakes region, dumping nearly a foot of the white powder in some places with more on the way. (latimes.com)
Our specialists have over 250 years of experience in between them, with particular expertise in fine illustrated books from the 15th to the 20th century, travel & voyages, natural history, modern firsts, rare children s books, guidebooks, Hebraica & Judaica, works of Russian interest, and Islamica. (abebooks.com)
The other thing to remember is that the subject of rare diseases is not just children anymore. (medscape.com)

It is possible to conclude that although ABH has been traditionally described as a rare condition, the data obtained in this study suggest a fairly high occurrence of the disease. (bvsalud.org)

Rare Disease PHGKB is an online, continuously updated, searchable database of published scientific literature, CDC and NIH resources, and other information that address the public health impact and translation of genomic and other precision health discoveries into improved health outcomes related to rare diseases. (cdc.gov)

The need for a next-generation public health response to rare diseases. (cdc.gov)
We are going to find that patients with a lifetime of good health may manifest a rare disease late in life. (medscape.com)

The rare earth element (REE) composition of a fossil bone reflects its chemical alteration during diagenesis. (lu.se)

A rare sexually transmitted disease (STD) that can destroy genital tissue has turned up in the United Kingdom, according to news reports. (livescience.com)

Rare Air toured the world, and extensively in the southern United States. (wikipedia.org)
The flash flood that has killed thousands of people in Libya this week followed a 'medicane', a rare but destructive weather phenomenon that scientists believe will intensify in a warming world. (yahoo.com)
On that day, millions of patients and their families around the world share their stories in order to raise awareness about rare diseases and their impact. (cdc.gov)
One lesson we have learned from the rare disease world is that each patient benefits from having an individualized treatment plan. (medscape.com)

Microsoft's dedication and commitment to game creators, research and development, and to gaming innovation made them the obvious partner to take Rare into the future. (ign.com)
A week after the China dust-up began, a research team in Japan announced that it had made a hybrid-vehicle motor free of rare-earth materials, and Hitachi has announced similar efforts . (technologyreview.com)
Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community. (rarediseases.org)
Tiina K. Urv, Ph.D., leads the Rare Diseases Clinical Research Network, part of NIH's Office of Rare Diseases Research. (medlineplus.gov)
What is it like to research a rare disease? (medlineplus.gov)
Andrea L. Gropman, M.D., studies rare diseases with support from NIH and the Rare Diseases Clinical Research Network. (medlineplus.gov)

Based in Israel, the company has built a platform which can not only scan the DNA data file of a patient with a rare disease, but can also use natural language processing (NLP) to read the up-to-date medical literature. (forbes.com)
Knowledge-based patient screening for rare and emerging infectious/parasitic diseases: a case study of brucellosis and murine typhus. (cdc.gov)

Neither is this situation helped by the fact that 95% of rare diseases lack an FDA-approved treatment. (forbes.com)
For more than thirty years, we have provided critical treatment options for patients with rare diseases. (pfizer.com)
The goal is to address barriers preventing individuals living with rare diseases from obtaining proper treatment, resources and care for their condition. (utah.gov)
Identifying best practices to improve care and treatment for individuals with a rare disease. (utah.gov)
However, parents may want to know whether their child is at high risk of a rare disease even if a treatment doesn't exist. (cdc.gov)

At issue is a decision on whether to follow through on a rare-earth and uranium mine that would greatly boost the island's economy. (foreignpolicy.com)

A U.K. woman contracted a rare STD called donovanosis, which can cause genital ulcers and destroy tissue. (livescience.com)
In some very rare cases that tissue can turn into cancer. (adweek.com)

Decisions are made in state government that affect the entire rare community. (utah.gov)
Rare and orphan diseases affect a small number of patients and their management presents specific challenges, including the need for complex and specialized care. (who.int)
Rare diseases affect a lot of patients. (medscape.com)

Despite their name, rare-earth elements (REEs) aren't all that uncommon, but they don't tend to be found in concentrated deposits (unlike, say, a vein of gold). (nature.com)
In an announcement at Microsoft's X02 Europe event today, the company confirmed rumors that it had purchased Rare Ltd, the company behind several of the N64's biggest hits, for $375 million and that development on Kameo: Elements of Power and the next edition of Perfect Dark for the Xbox are already under way. (ign.com)
One U.S. company is gearing up to wrest control away from China and start producing rare earth elements found in most modern-day devices. (zdnet.com)

The RDAC is an advising body that provides a platform for those in Utah's rare disease community to have a stronger voice in state government. (utah.gov)

Shapero Rare Books is an internationally renowned dealer in antiquarian & rare books and works on paper. (abebooks.com)

This time, the victim was a rare Astor markhor mountain goat, the national animal of Pakistan. (peta.org)
He says that the Cancer Council 'Rare and Less Common Cancer' resources would have brought him and his family great comfort at a difficult time. (cancer.org.au)

20191

7,000 rare diseases2

Disorders3

World's4

Earths7

200,000 people4

20161

Diagnosis4

NORD6

20201

Cancers3

Minerals4

Collectively common2

Diseases that affect2

20221

Centers1

Content1

Tumors1

Researchers5

Treatments5

Neodymium1

Genetic diseases1

Degenerative1

Main2

Metals2

Advances1

Intestinal2

20211

20182

Organizations4

Crystals1

Metabolic2

Gene3

Living with a rare disease1

Genes1

Therapeutic1

Footage1

19891

Children5

Traditionally1

Precision Health1

Health2

Composition1

News1

World4

Research6

Patient2

Treatment5

Boost1

Tissue2

Affect3

Elements3

Disease community1

Dealer1

Time2