Emirates Central Cooling Corporation organises blood donation campaign

March 31, 2010

Courtesy by: bi-me.com

Emirates Central Cooling Corporation (Empower), the largest district cooling service provider in the region, held its fourth blood donation campaign in aid of children suffering from thalassaemia and other blood conditions recently under the aegis of Dubai Blood Donation Centre of Dubai Health Authority.

A significant number of volunteers donated blood as part of the company’s corporate social responsibility. The donated blood will go towards helping “Thalassemia” patients as well as others in need of blood.

Some 154 persons donated blood during the event. Students from high schools put up an entertainment program for the donors. All the donors, sponsors and volunteers were recognised with certificates of appreciation, gifts and prizes.

Ahmed Bin Shafar, CEO, Empower said: “The primary aim of establishing Empower was preserving the environment and to give our children a better life with natural resources.

This campaign will help meet the continuous need for blood supplies in Dubai. Empower is keen to continue such initiatives which reflect its firm commitment to society.”

Blood donations plat a crucial role in saving the lives of many, particularly children suffering from thalassaemia, who normally need repeated blood transfusions, in addition to many others who are being treated for other serious diseases.

The response was unprecedented and donors have already signed for Empower’s next Blood Donation Campaign expected to be held in/around August 2010.

The campaign was held with the help of sponsors, including Mohammed Bin Rashid Establishment for SME Development, Dubai Healthcare City (DHCC), Transgulf Electro Mechanical, Mario Associates, Gea Ecoflex, Technical & Trading Establishment, Union National Bank, Al Zarooni Electo Mechanical, Mezbaan Hyderabad Restaurant, Jeema Mineral Water (PSC) and AECOM Ellerbe Becket.

Blood transfusion is a vital aspect to combating “Thalassemia”, a genetic blood disorder that affects a person’s ability to produce haemoglobin, resulting in severe anemia.

Bin Shafar added: “Empower has always been at the forefront of organising such community focused campaigns.

We thank all the Empower employees and members of the public, who came forward to assist Thalassemia patients.”

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A long but successful journey of Kerala’s blood disorder patients

March 31, 2010

Courtesy by: twocircles.net

They traveled three thousand kms by train taking three days and two nights to reach NewDelhi, the capital city of India. One of the main motivations behind this journey was 4th International Conference on Thalassemia which took place on 31st October and 1st November 2009 at Hotel Intercontinental Eros New Delhi. Actually they came to New Delhi not for attending the conference. They couldn’t speak or understand English or Hindi, the national language of the country. Most members of them were Thalassemia afflicted patients and their parents. Some were other blood disorder patients like Sickle cell anemia, Hemophilia, Applastic anemia and Leukemia.

Kerala is a small state with 3crores of population in utmost southern part of India. Kerala is not only a role model state in health services in India but also a complete literacy state in the nation. In the tourism map it is known as God’s own country. In Kerala near about fifty percent of population belong to Hindu religion community. Above 20% are Christians and above 25% are Muslims. The communist ideology is ruling this small state in alternative five years term getting elected by the people for last 25 years. Rest of the period after Independence has been ruled by the Indian National Congress. The communal fabrication with social amity and the peaceful social life is the salient feature of this small state. No space here for communal violence or hatred in the name of religion, caste or creed.

One of the major achievements in health sector is the low child mortality rate. But this phenomenon rises the morbidity rate of children same as the developed countries. But unlike the developed countries Kerala has no facilities to prevent or to avoid this like morbidity rate by using new technologies like antenatal diagnosis. These pathetic situation causes to rise various kinds of hereditary disorder disease like Thalassemia, Sickle cell anemia, Hemophilia and different kinds of birth defects. In Wayanad, a hill district of Tribal people in north Kerala alone, about five thousand persons are suffering from sickle cell disease among the tribal. Twenty thousand carriers among the tribal are the major threat in the health sector in the future years in hereditary disease.

Even though the prevalence of blood disorder patients is very high in north Kerala especially in Malabar region no sufficient facilities are available in hematology check up and no service of hematologist in this state.

Blood Patients’ Protection Council (BPPC) is an organization of acutely blood disorder patients like Thalassemia, Hemophilia, Leukemia, Sickle cell anemia and their parents have been fighting for the better treatment, life saving drugs and vital right of these patients for the past fifteen years. For achieving the birth right of patients many agitations were organized like road blockade including a state Secretariat march by traveling 800 km by BPPC. But the Govt. took a stubborn position against the patient’s demand. That was the one reason compelling the patients to travel to New Delhi by declaring a parliament march.

They raised slogans demanding better treatment and life saving drugs for acutely ill patients and demonstrated towards the Indian parliament on 29th October 2009. The patients raised 10 point demands including the set up of an antenatal screening facilities at Calicut medical college hospital where depends 1.5 crore people for better treatment in Malabar area and some part of Karnataka and Tamil Nadu state. Near about 100 blood disorder patients and their parents took part in the parliament march. Delhi police blocked their march with barricade at Jantar Mantar, New Delhi. The march was organised by BPPC under the leadership of Kareem Karassery, the General Convener of BPPC.

Tom Vadakkan, Secretary, Indian National Congress, the ruling party of India inaugurated the march. After the march, the participants rushed to All India Congress Committee Office New Delhi. Patients and their parents expressed their grievances and the miseries due to lack of expert treatment, life saving drugs and other ill feelings before the eminent leaders and office bearers of the ruling party (AICC) of India.

Dr. Shakheel Ahmed spokesperson of the ruling party addressed an elaborate press conference with the blood disorder patients and their parents from Kerala at AICC office. AICC Secretary Tom Vadakkan was also present in the crowded press conference. Dr. Shakheel Ahmad assured the acutely ill children and their parents from Kerala that the Govt. of India and the health and family welfare department will take urgent step to solve the 10 points demand raised by BPPC Kerala. They would bring the matter before the president of the Congress party Sonia Gandhi, central health Minister Gulam Nabi Azad and AICC gen. secretary Rahul Gandhi immediately. Only after achieving the assurance from the ruling party head quarters the patients and the parents returned from there.

The following day patients visited all monumental and significant tourism places in Delhi with their parents. They also visited Indian Parliament. Some office bearers of BPPC were delegates of the International Conference on Thalassemia at Hotel Intercontinental Eros. Due to the medium of conference and instructions was English/Hindi rest of the members of this team couldn’t register or attend the conference and same day they went to Agra and visited the Taj Mahal, one of the seven wonders of the world and other world heritage monuments like Agra Fort and well known pilgrimage center like Madura Temple etc. This journey was very pleasant for the children who are suffering with fatal diseases, especially for school going students. Parents also enjoyed this trip as great relief and relax from their painful fate of prolonged life.

On 2nd October 2009 all patients and their parents were attended in the Thalassemia clinic at Sir Gangaram hospital which was constituted by the part of International conference on Thalassemia for the registered patients. But most of our patients or their parents were not registered in the conference. Yet, Dr. V.K. Khanna, Head, Department of Hematology, Sir Gangaram hospital agreed to check up all patients even in the busy day.

The patients got a thorough check up and well medical advice from the clinic. Ms. Shoba Tuli, vice president of Thalassemia International federation helped for facilitating the check-up. Dr. P.M. Kutty, President, Malabar THAS Society, Dr. V.T. Ajith Kumar treasurer of the society also helped to make this check up a reality. The hospital authority served good delicious snacks to the patients. They returned from the hospital after the check up was over with the immense gratitude to the Gangaram hospital especially to Dr. V.K. Khanna. Many Malayalam Language dailies published this news of events with the group photograph of patients with Dr Khanna.

The following day all patients and their parents returned from New Delhi after a week-long tremendous mission and good feelings with significant knowledge to their home state by train. We reached on 5th October without any inconvenience. The journey was good with songs, jokes and dance of children.

When we reached Calicut a letter from Union Health Minister Gulam Nabi Azad reached to Calicut. He said in his letter that he has examined the matter and would get back to us shortly. In another letter sent by the secretary of All India Congress Committee (AICC) Rama Chandra Kundiya, MP, mentioned that Sonia Gandhi, President, AICC, forwarded the application submitted by BPPC to the health minister.

Along with these responses a breakthrough occurred in the health field of Kerala.

Ms. P.K. Sreemathi, health minister of Kerala declared that all acutely ill patients below eighteen years of age will get free treatment from Jan 2010 without considering their income. Besides, central health minister informed the local MP M.K. Ragavan that he sanctioned Rs 3 crore for the development of oncology department at MCH, Kozhikkode with immediate effect. The annual central budget allocated a considerable amount for the development of public health sector.

Blood disorder patients and their parents believe that the multi-purpose journey to New Delhi was not in vain. They are expecting more from the Central and State Government.

(Kareem Karassery is General Convener, Blood Patients’ Protection Council, Malabar Zone, Kerala, India, and can be contacted on 9447019182)


With Rare Disorders, Misdiagnosis and Desperation Prevail

March 23, 2010

Couresty by: palmbeachpost.com

People diagnosed with cancer have a difficult and scary battle ahead of them, but there’s comfort to be found in the multitude of patient groups, medical associations, research facilities and hospitals dedicated to improving treatment of their disease.

But what if a person suffers from thalassemia, a blood disease that affects hemoglobin? Or cystic fibrosis, a disease that causes mucus to clog the lungs and pancreas? Or jumping Frenchmen of Maine, a disorder that causes an extreme startle reaction to unexpected noises or sights?

These conditions all fall into the category of “orphan diseases” — conditions so rare that they attract little attention and few research dollars. People who have an orphan disease often find themselves misunderstood and misdiagnosed, and with no immediate support available to them.

“We get phone calls from literally desperate people,” said Stefanie Putkowski, a registered nurse and clinical information specialist for the National Organization for Rare Disorders, a nonprofit group dedicated to orphan diseases. “I don’t know if they are hopeless. They are desperate. They can feel very isolated.”

The U.S. Food and Drug Administration categorizes a medical condition as a rare disease if it affects fewer than 200,000 Americans at any given time. There currently are more than 6,000 known rare diseases that affect more than 25 million Americans.

“That’s almost one in 10 Americans,” said Mary Dunkle, vice president of communications for the rare disorders group. “Even though the diseases are rare, when you put them all together, a lot of people are affected.”

People affected by a rare disease all have remarkable tales, their own personal odyssey through a health-care system that cannot figure out what’s wrong with them, Dunkle and Putkowski said.

Putkowski related a conversation she had with a young mother who had spent six years trying to figure out why she was suffering repeated incidents in which she could not catch her breath.

Doctors puzzled over it for years. They prescribed steroids and inhalers, but her symptoms only worsened. Some doctors threw up their hands, said it was all in her head and urged her to see a psychiatrist.

The young woman finally went to one of the nation’s top pulmonary hospitals. After spending 12 days there, doctors figured out that she had Churg-Strauss syndrome, a very severe disease that causes inflammation of the blood vessels. The disease often tricks doctors because it presents as a lung disease when really it’s a vascular condition.

“She was told in another six months she would not have been treatable,” Putkowski said. “She ended up getting a real, true diagnosis. But, by that time, she had lost her job and was living in public housing on public assistance.”

Getting a solid diagnosis is just step one of the ordeal faced by a person with an orphan disease. Because the diseases are so rare, they lack the support groups and national organizations that have formed around more common illnesses. The young woman had called the National Organization for Rare Disorders because she wanted to find out if there were any support groups or treatment grants for Churg-Strauss syndrome, Putkowski said.

Orphan diseases also don’t attract as many research dollars because, by comparison, few people are affected by the diseases. For pharmaceutical companies, there’s less chance for a good return on their investment.

“Very little money goes into these orphan diseases because there’s very little money to be made in the end,” said Pat Girondi, founder of the Orphans Dream Foundation. “The patient base is too low.”

Girondi, a Chicago businessman, founded his nonprofit group to help support research into orphan diseases. His son, Rocco, was diagnosed in 1992 with thalassemia at age 2. Girondi said he spent years taking his son around the world — California, Canada, Italy — looking for treatments for the disease.

Rocco, who is now 19, survives by receiving blood transfusions about twice a month, and his father’s group is funding cutting-edge research into treating thalassemia with stem cells.

His is not an isolated case. Other families of people ill with an orphan disease have also sponsored research into the affliction that’s harming their loved one.

“What we have found … is that one of the main ways these rare disorders get research funding is through the patients themselves,” Putkowski said. “Either the patient or the patient’s family will mobilize themselves. For example, they’ll put donation cans out in local gas stations. We’ve had the most remarkable stories of people who have started just like that and have come a long way in raising research funds.”

Girondi’s foundation and Putkowski’s group both help people find support for their disease and try to direct research funding toward developing treatments and cures for orphan diseases.

Though research into orphan diseases might seem specialized, it holds the potential for paying big dividends toward medical science as a whole. Doctors looking into rare disorders might learn things that would apply to a broader range of people.

Dunkle gave the example of a research team now studying a very rare bone disease. “The more they learn about that disease, it will teach them more about things as simple as fixing a broken arm because they are researching how bone grows,” she said.


Thalassemia Society to start blood bank today

March 23, 2010

Courtesy by: expressbuzz.com

HYDERABAD: The Thalassemia and Sickle Cell Society, a non-profit group that seeks to provide relief to the tens of thousands of children afflicted with the diseases annually, will inaugurate a blood bank at Chatta Bazar here on March 20.

Thalassemia and sickle cell are inherited blood disorders that affect haemoglobin production. More than 40,000 new victims are diagnosed yearly. The diseases require frequent blood transfusion, often once in a fortnight, for the patients to live. This requires children with the disorders to receive dozens of blood transfusions before their third birthday.

At a press conference here today, parents of afflicted children explained the stresses under which they had to operate.

“We feel like no one will help. We constantly have to worry about where the next transfusion will come from,’’ said a parent. To mitigate these concerns, the Thalassemia and Sickle Cell Society aims to bring several operations, including diagnosis, transfusion and storage of blood under their new facility. It also seeks to pair patients with regular donors to reduce the chances of bloodborne infections. Any person can adopt a thalassemia child and become what they call `blood brothers’.

The new blood bank’s location was stragetically chosen to cater to Hyderabad’s most disadvantaged children. Most of Hyderabad’s blood banks are situated in the new city, and very few are south of the Musi.


Turkish doctors to fight against thalassemia in Mosul

March 23, 2010

Prof. Dr. Duran Canatan with the Mediterranean Foundation on Hematology has received an invitation from the city of Mosul to fight against thalassemia.

A delegation from the City of Mosul’s Health Department led by Dr. Selahattin Huseyin paid a visit of courtesy to Dr. Duran Canatan on Thursday.

Dr. Hüseyin and Dr. Canatan exchanged viewpoints on methods to fight against thalassemia in Mosul.

The two doctors signed a preliminary protocol, one that will be coordinated by the Governorship of Mosul, to fight against thalassemia.

Dr. Canatan said that Turkey began its struggle against thalassemia in 2003.

“Since then, the number of Turkish patients with thalassemia has decreased by 90 percent,” Dr. Canatan stressed.

Thalassemia is an inherited autosomal recessive blood disease. In thalassemia, the genetic defect results in reduced rate of synthesis of one of the globin chains that make up hemoglobin. Reduced synthesis of one of the globin chains can cause the formation of abnormal hemoglobin molecules, thus causing anemia, the characteristic presenting symptom of the thalassemias.

Courtesy by: todayszaman.com

Thalassemia is a quantitative problem of too few globins synthesized, whereas sickle-cell anemia (a hemoglobinopathy) is a qualitative problem of synthesis of an incorrectly functioning globin. Thalassemias usually result in underproduction of normal globin proteins, often through mutations in regulatory genes. Hemoglobinopathies imply structural abnormalities in the globin proteing themselves. The two conditions may overlap, however, since some conditions which cause abnormalities in globin proteins (hemoglobinopathy) also affect their production (thalassemia). Thus, some thalassemias are hemoglobinopathies, but most are not. Either or both of these conditions may cause anemia.

The disease is particularly prevalent among Mediterranean people, and this geographical association was responsible for its naming: Thalassa, meaning sea and blood in Greek language.


Genetix Pharmaceuticals raises $35 Million in Series B financing

March 15, 2010

Courtesy by: siliconindia.com

Bangalore: The Cambridge-based developer of gene therapies, Genetix Pharmaceuticals, has raised a $35 million Series B financing with new investors Third Rock Ventures and Genzyme Ventures, along with the participation of TVM Capital, Forbion and Easton Capital.

According to the company, proceeds from the financing will be used to advance current clinical programs, strengthen platform capabilities and further expand the team. “The Genetix platform represents the convergence of the powerful therapeutic modality of gene therapy with a class of severe genetic disorders lacking safe or widely available treatment options,” said Nick Leschly, Interim President of Genetix and Partner of Third Rock Ventures. Anup Arora is the Interim Chief Business Officer at Genetix Pharmaceuticals.

Genetix’s proprietary lentiviral technology delivers corrective genes to the patient’s own bone marrow cells, providing a one-time effective therapy, a true paradigm shift in the treatment of genetic diseases. Genetix has programs in clinical development in Adrenoleukodystrophy (ALD), a severe neurodegenerative disorder, and beta-Thalassemia, one of the most prevalent human genetic disorders. Both of these programs have shown strong early results to date and stabilization of their respective diseases.

“Genetix is making important progress in its gene therapy clinical development programs,” said Alan Walts, Managing Director of Genzyme Ventures. “We look forward to joining the company’s Board, supporting its growth, and bringing to bear our experience in rare genetic diseases.”


3rd Pan Arab Human Genetics Conference opened

March 15, 2010

Courtesy by: khaleejtimes.com

DUBAI – Under the patronage of H.H. Shaikh ‘Hamdan Bin Rashid Al Maktoum’ Deputy Ruler of Dubai, UAE Minister of Finance and President of Dubai Health Authority, H.E. Dr. ‘Hanif Hassan’, UAE Minister of Health, Chairman-Board of Directors at Shaikh Hamdan Bin Rashid Award for Medical Sciences, inaugurated in today the ‘3rd Pan Arab Human Genetics Conference’, that is organized by the ‘Center for Arab Genomic Studies’, a division of ‘Shaikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences’, in Dubai.

The two-day conference will discuss the latest genome research activities in the Arab Region with the participation of specialists and consultants who will present 150 research papers from 36 Arab and foreign countries. The conference is attended by a large number of doctors, decision makers, and doctors under training, academics and students of medical colleges, nurses, and laboratory technicians.

The Minister said the Award had laid down proper scientific and practical plans to advance medical and genetic scieinces not only in the UAE but also across the Arab World.

He said Shaikh hamdan, patron of the Award, established the Centre in 2003 to develop reserach on human genetics and boost relations of cooperation between getic researchers in the region and the world.

In the Arab World, genetic diseases represent a major public health problem. Several factors contribute to the wide prevalence of genetic disorders in the region including the high rate of consanguinity, social trend to have more children until menopause, selective factors favoring inherited disease characters like thalassemia and glucose-6-phosphate dehydrogenase deficiency, and the lack of public awareness towards the early recognition and prevention of inherited disease.

The vision of H.H. Shaikh Hamdan Bin Rashid Al Maktoum to alleviate human suffering from genetic diseases in the Arab World crystallized in the establishment of the Centre for Arab Genomic Studies (CAGS) to characterize and prevent genetic disorders and transfigure the future practice of health care in the region.

Some of the priority objectives of the Centre for Arab Genomic Studies are to educate the public and professionals alike on the important impact of genetic diseases in the Arab World and the methods and benefits of early genetic diagnosis. The Centre for Arab Genomic Studies also plans to provide comprehensive genetic services by translating research achievements into well-integrated patient treatment programs. Concurrently, it will also address the ethical, legal, and social issues that may arise with the implementation of such programs.

This year’s conference is highly supported by the World Health Organization ‘WHO’ through the participation of the Regional Advisor for Research Policy at the WHO Regional Office for the Middle East in Cairo, Egypt. In addition, this year’s research papers are characterized by their high quality materials that reflect the status of scientific development of Arab scientists in this field.

Dr. Mohammad Afzal Research Policy and Cooperation, Regional Office for the Eastern Mediterranean, World Health Organization, Cairo, Egypt, spoke about Governance Challenges of Genomic Applications in Healthcare Systems.

He said ‘Exponentially growing human genomics research and its commercial involvement in the present century has created a significant number of policy challenges, such as patenting, genetic testing and genetic information. The transition of governing via risk to governance by uncertainty is another challenge to contemporary genomics governance. These new topics of genomics governance have not been taken up seriously in the already operating or emerging institutional structures of policy making in the counties of the Eastern Mediterranean.

Besides, he added there exists a gap between policy challenges and institutional responses and even with meager genomic research in the Region that might lead to growing social opposition against genomics. The healthcare systems, therefore, must have institutional basis to determine the clinical parameters and real potential of genetic testing application in the diagnosis and treatment of disease, and priority setting mechanism for scientific and social policy research. In the meantime, research ethics committees and advocates should develop ethical frameworks to encourage innovation, while protecting research participants and patients from potential harm.


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