Palmerston Road Sydenham in East Belfast is once more being held under threat of the Developers once more we have to fight to try and save our green belt that runs from the top of the Palmerston Road to the Station Road we have Developers trying to erect apartments behind homes causing fear among the residents that their homes would be over looked or that water pipes in the area could not cope with waste as the water system is the same as it was many years ago. But the Developers are back once more trying to build apartments on the only part of green belt thats left in the area of Sydenham this is not any other green belt it forms a valley of trees wildlife bats birds the habitat has taken years to grow and some of the trees that are under threat are two hundred years old and the Developers claim the apartments they are planning will be echo friendly yet if they are built with the present planning application it will wipe out a area that has trees of two hundred years old and it will cause the biggest ever change to an area like sydenham that could never be put right as the trees are part of the fibre of Sydenham and the Valley is known in the area as Bunkers Hill after the American War when a soldier returning from that war at Bunkers Hill in American named it after the battle ,They also claim these apartments will be echo friendly yet the plans they are proposing has cut out most of the aspects of the gardens and trees and also removed disabled parking and cycle racks and they claim to be building them for people who have retired
To claim they are eco friendly is a joke when they are planning so much destruction of part of our green belt they seem not to care about what the residents in the area want they dont care about how the residents feel about the private driveway they have planned for the entrance of the site they seem to don't want to listen to peoples concerns many of the people have lived in their homes for many years the site entrance is on to Denorrton Park it is not on a major road it is only a side street of the major Holywood Road that has enough problems with parking and cars parking on the footpaths this Development will bring more traffic to this very quite street and will add to the problems for the residents of the park.
Northern Ireland Planning Service should step back and learn the mistakes from the past the need for them to listen to local residents who already live in the area should have protection from developments like this, when the planning office must see that this development is being shoehorned into a site that is far from suitable and the planning service know the feeling of the residents in Denorrton Park they also seem to have forget to ask the residents of the Palmerston Road how they feel about this development as it will mean overlooking issues Bunkers hill looks over the Palmerston Road and any development would cause major problems for them but the Planning Service seem not to care about the feeling of residents on the Palmerston Road that such a major change to the habitat is being railroaded through behind their backs and have not any say in what may cause major problems in the future for them as well as make a difference in how they feel living in an area that trees will be replaced with apartment blocks and their privacy will be compromised by this development and the opening of the floodgates to other developers moving into the area offering huge amounts of money to residents to move out. To enable them to build more apartments because the Northern Ireland Planning Service can not protect or preserve the heritage of the residents who have lived in the area and bring their children up in the homes it will cause a huge change for the residents they will be expected to live with overlooking issues where once their homes looked out on a hill covered in green habitat and if the flood gates open it will mean for the residents that apartments will take the place of homes and mean people looking down on them day and night
We ask the Northern Ireland Planning Service to look after the rights of the residents from the Palmerston Road who's privacy is being compromised if the Northern Ireland Planning Service do not stand up for their rights of privacy it would be a great miss justice to them we ask the Northern Ireland Planning Service to carry out a proper survey in the area to include residents from Denorrton Park,Palmerston Road,Larkfield Park,Palmerston Park,Victoria Road,all residents that would be affected if this green belt was removed to make way for developments if the flood gates were to open causing a domino effect along this only part of green belt that is left in the Sydenham Area that is so important to the residents
We ask Harry Roston Architect Ltd and Limetree Retirement Homes to meet the residents of the area and give them their chance to speak with the reps in the area before these amended plans are put in place and action taken to start any development at this site some of our residents are in their retirement and have lived in the area for most of their married life or it is married children of the retired please think of how this development and any future developments would have on their lives
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Saturday, July 9, 2011
Monday, March 21, 2011
Friday, March 11, 2011
raredisease-ni - Just another WordPress weblog
A Meeting is planned to take place in the month of March of the Raredisease Fourm the meeting will be to set up the board and to plan our Press release and the way forward on policy
The Cavan Tommy Hoey Trust organisors of Rare Disease Day in Northern Ireland have set up a new group that will be called Raredisease Northern Ireland Forum. It has been established to run and to organise Rare Disease Day, it will also set up a forum for patients and families and carers of people with rare diseases. It will be a support network for patients and families and carers of people with rare diseases.
Tuesday, March 1, 2011
Saturday, February 26, 2011
RARE DISEASE DAY -- FEBRUARY 28, 2011 - The Petition Site
- Target: The United States Government
- Sponsored by: Stephanie Hunt
On February 28, 2011 millions of people around the world will observe Rare Disease Day for the 4th year. This is the 3rd year that the United States will join in.
Rare disorders affect the entire family of an individual patient as they endure ongoing stress and isolation while managing the medical and financial issues that arise. As a parent of a child with a rare disorder, Stephanie knows very well the hardships that must be overcome.
As Mrs. Michigan America 2010 and Mrs. United States 2007, Stephanie has fought hard for the recognition this day will bring. Rare Disease Awareness is the platform that Stephanie promoted in her reign as Mrs. United States 2007 and she continues to work as a spokesperson for NORD, The National Organization for Rare Disorders.
The goal of this petition is to collect signatures from all walks of life, from those that stand with, behind, and for those affected by Rare Disease. Collectively we can show that we do care and will take care of our most vulnerable citizens.
Please sign this petition and visit the NORD Website to find out more about how you can continue to help bring this day to life in each and every state in America.
With respect,
Stephanie
RARE DISEASE DAY -- FEBRUARY 28, 2011 - The Petition Site
- Target: The United States Government
- Sponsored by: Stephanie Hunt
On February 28, 2011 millions of people around the world will observe Rare Disease Day for the 4th year. This is the 3rd year that the United States will join in.
Rare disorders affect the entire family of an individual patient as they endure ongoing stress and isolation while managing the medical and financial issues that arise. As a parent of a child with a rare disorder, Stephanie knows very well the hardships that must be overcome.
As Mrs. Michigan America 2010 and Mrs. United States 2007, Stephanie has fought hard for the recognition this day will bring. Rare Disease Awareness is the platform that Stephanie promoted in her reign as Mrs. United States 2007 and she continues to work as a spokesperson for NORD, The National Organization for Rare Disorders.
The goal of this petition is to collect signatures from all walks of life, from those that stand with, behind, and for those affected by Rare Disease. Collectively we can show that we do care and will take care of our most vulnerable citizens.
Please sign this petition and visit the NORD Website to find out more about how you can continue to help bring this day to life in each and every state in America.
With respect,
Stephanie
Friday, February 25, 2011
.: My phobia of doctors almost cost me my life
My phobia of doctors almost cost me my life
Support Rare Disease Day, February 28, at Heyn Hall, St Mark’s Chuch, Sydenham – 11am to 2pm
Terry Hoey is a well-known champion of causes such as Rare Disease Day but, he tells Megan Conroy, his ‘white-coat syndrome’ made him neglect his own healthThe next few hours are crucial,’ are words dreaded by anybody but for an east Belfast man they were the words that saved his life. Terry Hoey (59), from Palmerston Road, had for 30 years struggled with a debilitating phobia that nearly cost him his life — a fear of doctors.
Those who have met Terry through his work heading up Palmerston Residents’ Association or tirelessly campaigning on issues ranging from Rare Disease Day to the demolition of Harland and Wolff founder Gustav Wolff’s home will have had no inkling of this secret phobia — or his severe illness.
A few weeks before Christmas, Terry had begun to feel unwell but believing he was just under the weather, he ignored the pain until finally his wife Maureen found him lying in a pool of blood after he collapsed in the |bathroom.
After being rushed to the City Hospital, physicians confirmed that Terry was suffering kidney failure and had suffered a mild seizure. He needed 12 stitches for the cut he suffered to his head but, for Terry, his surroundings caused him more fear than the needle. Maureen was told that her husband was “very ill”.
And as if things weren’t bad enough, Maureen lost an eye in a freak accident as Terry was recovering. “I was upstairs trying to pull a plug out of the socket, I caught my eye on the table. The pain was horrendous, I was taken to the hospital where I had to have my eye removed,” she says.
Now the couple are adjusting to a new set of realities and Terry is keen to encourage other people sharing his fear of physicians not to bury their heads in the sand as he did.
“I have always been terrified of going to see a doctor. It’s something that has been with me for such a long time. If I have to force myself to see a doctor, I usually come out thinking the diagnosis is fatal. I began taking my wife with me so she could explain later that I was not given bad news,” he explains.
Maureen noticed a few days before he collapsed that Terry was declining. She says: “Terry had no appetite for a few days, he began having hallucinations and was getting weaker by the day. He began to fall over things.
“I had no idea what was wrong with him but would never have imagined it was kidney failure.”
Terry was diagnosed as bipolar 16 years ago and believes that his phobia is related to his condition. When he first began to feel ill, his wife, friends and family assumed that his symptoms were because of that.
“I would often go in and out of spells of depression. I would be on a high for a few weeks and then I would get really down — so down that I would be out of work for seven weeks at a time,” states Terry. “I did not know I had bipolar; it went undiagnosed because I could not face going to the health centre.
“I have been getting treated for the condition for 10 years, seeing psychiatrists and getting medication but the white-coat syndrome remains.”
Facing his biggest fear after being admitted to hospital Terry talks highly of the City Hospital: “The staff at the hospital have been great, they comprehend my phobia and have tried to help me through it. It was always my biggest nightmare, but now they have been able to diagnose other problems I have.”
Now undergoing kidney dialysis, Terry looks a picture of health and appears unfazed by his illness.
“I feel better now than I have done in years. The dialysis drives me crazy though having to go to the hospital three times a week. I blog when I am having dialysis. It helps take my mind off it.”
He has ruled out the prospect of a kidney transplant for the moment: “The physicians have told me I will need to have a transplant but the Government do not class me as high-risk |because of my age and I would not be prepared to ask any member of my family to be a live donor.”
“I have felt better since the dialysis. My mind is also at ease because I used to think that the hernia was cancer.”
Terry, who was a sewing-machine engineer by trade, retired after developing arthritis in his hands. He then threw his energy into community projects and campaigning for Rare Disease Day, an issue that is close to his and Maureen’s hearts.
Terry’s grandson Cavan was diagnosed with two rare diseases seven years ago, and since then Terry has been an avid supporter of Rare Disease Day.
“Cavan suffers from HLH and XLP. Both diseases are hereditary but it basically means that Cavan has a very low immune system; he can run around and play but he has regular visits to the hospital and general colds and ‘flu could be fatal to him. He has such a high spirit though, you would not know he was poorly.”
The Cavan Tommy Hoey Trust was set up to raise funds for rare diseases and Terry hopes that this year he will be able to set up a trust for the whole of Ireland.
Rare Disease Day will be held in St. Mark’s Church, Sydenham, on February 28 and Terry hopes that it will have a good turn-out. Terry said: “At the minute we use our own money to fund these events, we put up the posters and try to get people interested. We want to talk out for those that have no voice. Some people have no idea about rare diseases let alone how many people in Northern Ireland suffer from them.”
Terry becomes agitated when |describing the lack of awareness sur
“When we take our collection boxes into shops, the assistants think up any excuse not to put them up, but if it was something like breast cancer they’d be more than happy to. There are so many families that are not receiving any benefit support in this country, |diagnosis can take up to six months here —it is a disgrace.
“Our health system is 36 years behind the rest of the UK.”
Terry is disgusted at the current plans to cut benefits in the UK. “All you hear from the MPs and MLAs is their plans to cut the health budget — it is ridiculous. It will be our kids paying for it; our hospitals have bloody nothing.
“When Cavan comes to visit, the hospital in England rings the Royal Victoria in advance so that the are aware of his condition. It just shows how far advanced the rest of the UK is when it comes to rare diseases.”
Terry, who blogs daily about health issues and his progress in raising awareness, has faced many hurdles in his quest. Last year he sent out over 150 invitations to local politicians and MLAs asking them to attend the Rare Disease Day — only one showed up.
“Naomi Long is the patron for the trust. She has always showed her support but the rest do not seem interested. We survive on donations from generous people and companies. The airports give some monetary gestures from time to time.”
Terry has found himself in a network of people suffering rare diseases that spans the globe.
“I get emails from people from Canada and the USA wanting to tell their story. It is eye-opening.”
When Terry is not busy campaigning about rare diseases he is helping run the Palmerston Residents’ Association. In the past he has protested against the demolition of historical buildings such as Gustav Wolff’s house just down the road from his home.
Terry said: “We do not want this area to be stuck with apartment blocks and become a built-up area. Already we have seen a drastic change since they knocked down houses and shops. There are many elderly residents here and it is not best for them when they have to travel to do their shopping. As part of the group we have managed to get the kerbs lowered so people with disability can get around more easily, we are in favour of the proposals for social housing in the area. However, more of projects like that are needed.”
When Terry claims that he will be going back to his association work after Rare Disease Day, Maureen quickly dismisses his plans: “No you will not, you will be taking it easy, you have too many operations coming up.”
Despite their ups and downs Terry and Maureen are an inspiration. Their charity work and constant battle with the health system shows that you will fight, if it is a cause you truly believe in.
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Rare Lung Diseases Consortium / RLDC, Cincinnati Children's Hospital Medical Center
Check out this website I found at cincinnatichildrens.org
Monday, February 21, 2011
Reye's Syndrome - Description of Reye's Syndrome
In the 1960s and 1970s, as many as 500 children in the United States per year were affected by Reye's syndrome, a serious, often fatal disorder.It is still not known exactly what causes Reye's syndrome to develop, but research has shown an association between the development of the syndrome and the use of aspirin to treat flu-like illnesses and chicken pox. Reye's syndrome is not contagious.
The number of cases of Reye's syndrome in the U.S. has dropped to 50 cases per year, due to educational campaigns that resulted in a decreased use of aspirin to treat children’s illnesses. More cases of Reye's syndrome occur during flu season -- the months of January, February and March. Most (90 percent) of those affected by Reye's syndrome are under age 15, but it may also affect teenagers and adults.
Attacks the Liver and Brain
Reye's syndrome affects many organs in the body, but particularly the liver and brain. It causes damage to the cells in the liver, which interferes with the liver’s ability to remove wastes from the body. These wastes, especially ammonia, cause brain injury and swelling (encephalopathy).Symptoms
Usually the flu, viral illness, or chicken pox is almost over, and the child is starting to recover, when the symptoms of Reye's syndrome begin:First stage:
Loss of energy, lethargy Nausea and vomiting Drowsiness Second stage:
Personality changes such as irritability, aggressive behavior Disorientation, confusion Drowsiness and lethargy may change to unconsciousness (coma) Seizures Diagnosis
The diagnosis of Reye's syndrome is based on the child having had a viral illness (especially if treated with aspirin), plus the symptoms the child is having. Special blood tests for ammonia level and liver function (AST and ALT) are done.Many types of illnesses and disorders have symptoms similar to Reye's syndrome, so medical providers may diagnose the symptoms as something else. One important clue to Reye's syndrome is the viral illness that was present before the symptoms started.
Treatment
Reye's syndrome is a serious illness. As many as 50 percent of individuals who develop the syndrome die from it. The individual with Reye's syndrome needs intensive care to reduce the brain swelling quickly to prevent permanent brain damage, and to prevent other complications from the disorder. Early diagnosis and prompt treatment will improve the individual’s prognosis.Prevention
Since the use of aspirin and aspirin-containing products is associated with increased risk of Reye's syndrome, The National Reye's Syndrome Foundation, the Surgeon General, the FDA, and the CDC recommend that those medicines not be given to children or teenagers who have the flu, an illness with a fever, or chicken pox.You may recognize some brands, such as Bayer or St. Joseph, as aspirin, but there are other products which contain aspirin, such as Anacin, Excedrin, Dristan, and Pamprin, or contain chemicals like aspirin, such as in Pepto-Bismol. If you aren’t sure if something contains aspirin, ask your doctor or pharmacist. The National Reye’s Syndrome Foundation also has a list of products containing aspirin that can help you.
Source:
The National Reye’s Syndrome Foundation. What is Reye’s Syndrome?
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Belfast Rare Disease Day Who Is It For And Why Is It So Important For Northern Ireland - Children's Hospital Los Angeles - Zimbio
Children's Hospital Los Angeles
Children's Hospital Los Angeles is a nonprofit organization that runs a hospital in Los Angeles. The organization is based in Los Angeles, LA and managed by Walter W. Noce Jr. Its official home on the web is http://www... [more]
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Wednesday, January 19, 2011
Cavan's Blog Site
Hemophagocytic Syndromes Sourced From Histiocytosis Association of America
The Cavan Tommy Hoey Trust Rare Disease Day Reception Northern Ireland Assembly 2010 Cavan Pictured on the day
Hemophagocytic lymphohistiocytosis (HLH) is a rare disorder of the immune system primarily affecting young infants and children. Although physicians have written about the disorder over the years, it has been only in the last few years that it has received more widespread attention. The prevalence of HLH is 1.2 in every 1,000,000 children under the age of 15.
In 1985, physicians from all over the world who were interested in studying the histiocyte and disorders related to this cell created the Histiocyte Society. Thanks to their research, in part financed by the Histiocytosis Association of America (HAA) and national subgroups, we now have a better understanding of the disease, as well as dramatically improved treatments. With growing knowledge, there is also increased awareness of the disease among nonspecialized physicians.The disease usually presents with fever and sometimes other symptoms of an infection. In many cases, a pathogen (viral, bacterial, etc.) can be identified. The human body contains many cells including T-cells and histiocytes that fight infection. The activation of these cells causes an inflammatory reaction in the body. Normally, when the pathogen has been eliminated, the inflammatory reaction is turned off, and the immune system returns to its steady state. In HLH patients, due to defect of the immune system, the inflammatory reaction persists and causes the symptoms of HLH.
What is the cause of this severe immune dysregulation?
We currently know that HLH occurs either on the basis of a genetic defect or as a secondary form with underlying diseases such as infections, cancer, or rheumatic diseases. In the primary form, also known as familial hemophagocytic lymphohistiocytosis (FHL or FHLH), defective genes are inherited from both the mother and the father (autosomal recessive inheritance). FHL is diagnosed if there is more than one affected child in the family and/or a gene defect has been determined. FHL should be suspected if the symptoms do not disappear with treatment or if symptoms recur when therapy has been stopped. The onset of FHL is usually early in life, and a persistent cure can only be achieved with BMT (bone marrow transplantation). It is important to know that infections can trigger both the familial and the secondary disease.
So far, 3 gene defects have been identified, which account for approximately 50% to 80% of the familial cases, depending on the population that has been analyzed. Two of the genes, PRF1 and UNC13D, are responsible for the synthesis of proteins, perforin, and MUNC13-4 that are involved in the killing process of infectious pathogens. They are believed to also have a function in switching off immune responses. The precise mechanism, however, is not fully understood. A third defect affecting the Syntaxin 11 (STX11) gene has so far only been detected in patients of Turkish origin. The function of the mutated protein remains to be elucidated. There remains a considerable percentage of FHL patients with no known underlying gene defect.
In cases of secondary HLH, a condition of temporary immunodeficiency seems to contribute to the development of the disease.
Symptoms
Typical symptoms of HLH besides persistent fever are pallor (paleness), jaundice, liver and spleen enlargement, and neurological symptoms, such as irritability or even seizures. The involvement of the bone marrow, the site of blood cell production, can lead to severe decline of the blood cell counts (red and white blood cells and platelets). On bone marrow examination, histiocytes that are “eating” other blood cells (also known as phagocytosis) can be detected. Although the disease was named after this phenomenon, it can be absent at the onset or even throughout the course of the disease.Because symptoms can vary widely, it is sometimes difficult for the physician to make a diagnosis of HLH early in the course of the disease without the help of specialized laboratory tests. To facilitate a rapid and accurate diagnosis, the Histiocyte Society has created diagnostic guidelines and recommendations concerning the treatment of HLH. This is known as the HLH-2004 treatment protocol.
Diagnosis & Treatment
How is HLH diagnosed?It is sometimes difficult to establish the diagnosis of HLH, and the combination of the clinical picture and certain laboratory test criteria is required. A test that has been found very useful in substantiating a clinical diagnosis of HLH is absent or low NK (natural killer)-cell function. This is found in 90% of patients with FHL, as well as in many cases of secondary disease. Results of NK-cell function testing are generally reliable if the blood sample is properly shipped and tested in less than 24 hours. NK function cannot be determined prenatally, and it may not be reliably studied until a child is several weeks old. Notably, this test does not discriminate between familial and secondary disease.
Detection of perforin by staining of lymphocytes and analysis by flow cytometry is a highly reliable method for predicting the likelihood of the PRF1 gene mutation as the cause of FHL in a given patient. This test can also be used with reasonable predictive potential to screen parents and siblings to determine whether they might be carriers of PRF1 mutations. This test is not available prenatally.
Another test recently described analyzes the expression of a molecule on the surface of NK-cells (CD107) by flow cytometry that marks NK-cell degranulation. Reduced expression can predict mutations in the UNC13D gene. This test also requires specially prepared blood samples and cannot be used prenatally.
Genetic testing is recommended in cases of suspected FHL and confirms the diagnosis. Usually a blood sample is used. Even in the event of death, salvaged tissue can be tested. Once the genetic defect of a patient is known, the parents and siblings can be easily tested to determine if they are carriers for this specific defect. In such cases, prenatal diagnosis is possible as well.
How is HLH treated?
Without treatment, FHL is usually rapidly fatal with a median survival of about 2 months. The current treatment protocol, HLH 2004, provides recommendations for HLH therapy with a combination of immunosuppressive drugs and chemotherapy. The protocol has been accepted internationally and is used in many countries worldwide. In order to prevent early death or severe persisting organ damage, therapy must be initiated in a timely manner. In FHL cases, only temporary remission will be achieved. For a definite cure, the patient must undergo BMT.
With the former HLH-94 protocol and the now active HLH-2004 protocol, high remission rates and cure rates with BMT have been reported.
Secondary HLH sometimes resolves spontaneously or after treatment of the underlying disease. In some cases, modified immunochemotherapy can be applied, while in others, full immunochemotherapy is required.
How can a genetic counselor help?
Genetic counselors are members of the health care team who work closely with referring physicians and other health care professionals to provide accurate, relevant, and consistent information to families at risk of inherited diseases, including HLH and other immunodeficiency disorders. Genetic counselors are trained to identify families at risk, provide information to families about a specific disorder, analyze inheritance patterns and risk of recurrence in a family, and discuss available options for testing. For disorders in which genetic testing is available, the genetic counselor helps families evaluate the potential risks and benefits of genetic testing, arranges for appropriate testing and collection of samples, and interprets and communicates the results of genetic testing to families in a meaningfuland compassionate manner. Genetic counselors also provide supportive counseling throughout this process and can assist with referrals to other health care providers and support services. Genetic counselors do not make decisions for their patients; rather they provide the information that each family needs to make decisions that are consistent with their own values and beliefs.
Where do I get more information?
The study center of the international HLH-2004 protocol is located in Stockholm, Sweden. There are several subcenters throughout the world that have clinical expertise.
It is recommended that genetic testing be coordinated through and requested by referring physicians or genetic counselors. There are several institutions that provide information and perform genetic testing.
For more information, please contact the following persons:
North America
Lisa Filipovich, MD
Cincinnati Children's Hospital
Cincinnati, Ohio, U.S.A.
Lisa.Filipovich@cchmc.orgNorthern Europe
Jan-Inge Henter, MD
Childhood Cancer Research Unit
Karolinska University Hospital
Stockholm, Sweden
jan-inge.henter@ki.seCentral and Eastern Europe
Gritta Janka, MD
Pediatric Hematology and Oncology
University Medical Center
Hamburg, Germany
janka@uke.uni-hamburg.deSouthern Europe
Maurizio Aricò, MD
Pediatric Hematology and Oncology
Children's Hospital
Palermo, Italy
arico@ospedalecivicopa.orgJapan
Eiichi Ishii, MD
Department of Pediatrics
Saga University
Saga, Japan
ishiei@med.saga-u.ac.jp
The Cavan Tommy Hoey Trust Help Us Fight XLP,HLH,
Monday, January 17, 2011
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