The black awareness ribbon supports awareness for narcolepsy and other sleep disorders.
World Sleep Day is intended to be a celebration of sleep and a call to action on important issues related to sleep, including medicine, education, social aspects and driving. It is organized by the World Sleep Day Committee of the World Association of Sleep Medicine (WASM) and aims to lessen the burden of sleep problems on society through better prevention and management of sleep disorders.
World Kidney Day is annually on March 10th! It is a world campaign to make people aware of the importance of their kidneys and treating them right. By creating awareness on this day, the goal is decrease the impact of kidney disease by letting people know about the signs of kidney disease and how to manage symptoms to live with kidney disease.
Diabetes and high blood pressure/ hypertension put people at risk for Chronic Kidney Disease (CKD). By increasing kidney disease screening, especially in these populations can find and treat patients earlier in their disease. Also for those patients who have experienced kidney failure then to advocate for kidney transplant.
Baby Safe Haven awareness cause uses a pink and blue ribbon. The awareness ribbon pin features the painting of a blue and pink awareness ribbon angel on a custom button pendant. The awareness angel pendant notes "Baby Safe Haven Awareness". Baby Safe Haven laws work by allowing parents to relinquish a newborn infant legally to state authorities and remain anonymous. Centers in areas establish a safe haven baby drop where parents can surrender a child.
Baby Safe Haven Awareness Ribbon Angel Custom Mug This custom mug features two pink and blue awareness ribbon guardian angel art paintings with the message "I Hope and Support Baby Safe Haven Awareness!" The custom pink and blue awareness guardian angel ribbon art picture coffee cups or mugs can be customized with personalized messages.
Baby Safe Haven Awareness Ribbon Angel Custom Tee The shirt art features a pink and blue awareness ribbon angel painting. The awareness angel t-shirt message notes "Baby Safe Haven Awareness". There is a large image on the back of the shirt and a smaller picture on the front of the shirt. The pink and blue awareness angel ribbon art apparel can be customized.
Baby Safe Haven Awareness Ribbon Angel Keychain The art side notes "Baby Safe Haven Awareness" and the reverse side states "I Hope & Support Awareness for Baby Safe Haven!" Add your own custom words for personalized angel art cause awareness custom charm key chains! You can also remove the text for an art only angel pendant key chain.
Baby Safe Haven Ribbon Awareness Angel Shirt The awareness angel t-shirt front message notes "Believe HOPE Baby Safe Haven". On the back of the shirt contains the cause message "I Hope & Support Awareness for Baby Safe Haven". The pink and blue awareness angel ribbon art apparel can be customized with personalized messages
Rare Diseases Denim Awareness Ribbon Angel Art Painting
Rare disease uses a denim ribbon or zebra stripes ribbon for its cause awareness. The jean denim ribbon is a reference that rare disease is often in the "genes". The zebra stripe is a reference to the medical expression, "when you hear hoof beats think horses not zebras" in looking for a common diagnosis versus the rare disease. There are Rare Disease Awareness Ribbon Gifts available online. Buy the denim awareness ribbon art on Zazzle or CafePress. Buy the zebra stripes awareness ribbon art on Zazzle or CafePress. Learn more about Awareness Gallery Ribbon Art.
Zebra Stripes Awareness Ribbon Angel Art Painting
Rare Disease Day was
established to raise awareness with the public about rare diseases, the
challenges encountered by those affected, the importance of research to develop
diagnostics and treatments, and the impact of these diseases on patients'
lives. The focus of Rare Disease Day 2010 was 'Patients and Researchers,
Partners for Life!' and is aligned with ORDR's philosophy that researchers need
to work closely with patients and patient advocacy groups to maximize chances
for success. This philosophy has been put into practice in our very successful
Rare Diseases Clinical Research Network.
There are about 7000 rare diseases identified
in the United States. About 80 percent of rare diseases are genetic in origin
and it is estimated that about half of all rare diseases affect children. Rare
diseases can be chronic, progressive, debilitating, disabling, severe and
life-threatening. Information is often scarce and research is usually
insufficient. People affected face challenges such as delays in obtaining a diagnosis,
misdiagnosis, psychological burden and lack of support services for the patient
and family. The goals remain for rare disease patients to obtain the highest
attainable standard of health and to be provided the resources required to
overcome common obstacles in their lives.
Rare Disease Day is celebrated around the world
to raise awareness among decision-makers as well as the general public
regarding rare diseases and their impact on patients’ lives. The NIH
celebrates Rare Disease Day to:
Demonstrate
and reiterate the NIH commitment to rare diseases research to help
patients
Highlight
rare diseases research, and the development of diagnostics and treatments,
being funded and conducted across NIH
Initiate
a mutually beneficial dialogue among public and private researchers,
patients, patient advocates and policy makers
Exchange
the latest rare diseases information with stakeholders to advance research
and therapeutic efforts
Put
a face on rare diseases by sharing stories of patients, their families and
their communities
The first Rare Disease
Day sponsored by EURORDIS was held in Europe on February 29, 2008. February
29th was chosen since it is a rare day and it is symbolic of rare diseases.
2009 was the first time that Rare Disease Day was observed in the U.S. In
addition to 17 European countries participating in Rare Disease Day 2009, the
United States was joined by Argentina, Australia, Canada, China, Colombia, and
Taiwan in celebrating the first global Rare Disease Day.
Retinitis pigmentosa is a group of related eye disorders
that cause progressive vision loss. These disorders affect the retina, which is
the layer of light-sensitive tissue at the back of the eye. In people with
retinitis pigmentosa, vision loss occurs as the light-sensing cells of the
retina gradually deteriorate.
The first sign of retinitis pigmentosa is usually a loss of
night vision, which becomes apparent in childhood. Problems with night vision
can make it difficult to navigate in low light. Later, the disease causes blind
spots to develop in the side (peripheral) vision. Over time, these blind spots
merge to produce tunnel vision. The disease progresses over years or decades to
affect central vision, which is needed for detailed tasks such as reading,
driving, and recognizing faces. In adulthood, many people with retinitis
pigmentosa become legally blind.
The signs and symptoms of retinitis pigmentosa are most
often limited to vision loss. When the disorder occurs by itself, it is
described as nonsyndromic. Researchers have identified several major types of
nonsyndromic retinitis pigmentosa, which are usually distinguished by their
pattern of inheritance: autosomal dominant, autosomal recessive, or X-linked.
Less commonly, retinitis pigmentosa occurs as part of
syndromes that affect other organs and tissues in the body. These forms of the
disease are described as syndromic. The most common form of syndromic retinitis
pigmentosa is Usher syndrome, which is characterized by the combination of
vision loss and hearing loss beginning early in life. Retinitis pigmentosa is
also a feature of several other genetic syndromes, including Bardet-Biedl
syndrome; Refsum disease; and neuropathy, ataxia, and retinitis pigmentosa
(NARP).
Retinitis pigmentosa is one of the most common inherited
diseases of the retina (retinopathies). It is estimated to affect 1 in 3,500 to
1 in 4,000 people in the United States and Europe.
Mutations in more than 60 genes are known to cause
nonsyndromic retinitis pigmentosa. More than 20 of these genes are associated
with the autosomal dominant form of the disorder. Mutations in theRHO gene
are the most common cause of autosomal dominant retinitis pigmentosa, accounting
for 20 to 30 percent of all cases. At least 35 genes have been associated with
the autosomal recessive form of the disorder. The most common of these is USH2A;
mutations in this gene are responsible for 10 to 15 percent of all cases of
autosomal recessive retinitis pigmentosa. Changes in at least six genes are
thought to cause the X-linked form of the disorder. Together, mutations in the RPGR and RP2 genes
account for most cases of X-linked retinitis pigmentosa.
The genes associated with retinitis pigmentosa play
essential roles in the structure and function of specialized light receptor
cells (photoreceptors) in the retina. These cells transmit visual signals from
the eye to the brain. The retina contains two types of photoreceptors, rods and
cones. Rods are responsible for vision in low light, while cones provide vision
in bright light, including color vision.
Mutations in any of the genes responsible for retinitis
pigmentosa lead to a gradual loss of rods and cones in the retina. The
progressive degeneration of these cells causes the characteristic pattern of
vision loss that occurs in people with retinitis pigmentosa. Rods typically
break down before cones, which is why night vision impairment is usually the
first sign of the disorder. Daytime vision is disrupted later, as both rods and
cones are lost.
See a list of genes associated with retinitis
pigmentosa.
How do people inherit retinitis
pigmentosa?
Retinitis pigmentosa often has an autosomal dominant
inheritance pattern, which means one copy of an altered gene in each cell is
sufficient to cause the disorder. Most people with autosomal dominant retinitis
pigmentosa have an affected parent and other family members with the disorder.
Retinitis pigmentosa can also have an autosomal recessive
pattern of inheritance, which means both copies of a gene in each cell have
mutations. The parents of an individual with an autosomal recessive condition
each carry one copy of the mutated gene, but they typically do not show signs
and symptoms of the condition.
This condition can also be inherited in an X-linked pattern.
The genes associated with X-linked retinitis pigmentosa are located on the X
chromosome, which is one of the two sex chromosomes. In males (who have only
one X chromosome), one altered copy of the gene in each cell is sufficient to
cause the condition. In females, (who have two X chromosomes), mutations
usually have to occur in both copes of the gene to cause the disorder. However,
at least 20 percent of females who carry only one mutated copy of the gene
develop retinal degeneration and associated vision loss. In most cases, males
experience more severe symptoms of the disorder than females. A characteristic
of X-linked inheritance is that fathers cannot pass X-linked traits to their
sons.
In 10 to 40 percent of all cases of retinitis pigmentosa,
only one person in a family is affected. In these families, the disorder is
described as simplex. It can be difficult to determine the inheritance pattern
of simplex cases because affected individuals may have no affected relatives or
may be unaware of other family members with the disease. Simplex cases can also
result from a new gene mutation that is not present in other family members.
Where can I find information about
diagnosis or management of retinitis pigmentosa?
These resources address the diagnosis or management of
retinitis pigmentosa and may include treatment providers.
