Thalassemia International Conference 2011

August 18, 2010

Dear Friends,

As many of you know FAiTh group – [Fight Against Thalassemia] has been engaged in arranging blood camps, awareness camps and free screening.

Thalassemia.com.pk is the only website in Pakistan about Thalassemia, which is updated and running successfully.

Since last year FAiTh is trying to attend every conference and seminar related to Thalassemia to represent Pakistan and Thalassemia patients of Pakistan.

International Conference is going to be held in May 2011 in Antalya – Turkey (details you can read on tif2011.org), I want FAiTh to attend and represent Pakistan!

But for that I need your support, I can’t do anything alone, need your contribution! 🙂

Contribute in it via ChipIn.com

-Ayesha Mehmood
Official Spokesperson
http://www.thalassemia.com.pk

Advertisements

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.


FAiTh on The First Blast @ Dawn News

January 24, 2010

On the last day of 6th National Thalassemia Conference & Workshops I got a call from Dawn News that they wanted to interview me, it was indeed a pleasure to know that FAiTh is being given a chance to prove themselves.

On 30th December I gave interview at their studio, along with me there were Dr. Waleed Bin Azhar – CEO Fatimid Foundation, Karachi.

I have got the complete show video uploaded for you guys.

Dr Waleed tell what’s thalassemia, its issues, complications, etc. [Video 1 & 2]

I was called to be a motivational figure and I talked about life with thalassemia. [Video 3]

Mr. Nafees talked about his two children who were thalassemia major but couldn’t survive. [Video 4]


Notes: 6th National Thalassemia Conference & Workshops

December 25, 2009

6th National Thalassemia Conference & Workshops
17th – 19th December 2009
Lahore

Day 1: Conference Inauguration – Pearl Continental Hotel, Lahore

Ceremony started with Tilawat-e-Quran at 4 pm, Mr. Hussain Jafri, Secretary General TFP Punjab Chapter gave Welcome Address, and Dr. Yasmeen Rashid Secretary General TFP gave introduction of TFP.
TFP was established in 2004, Thalassemia patients registered with TFP are 25000, 39 NGOs working with TFP till date.

Prevention program being designed and developed by the help of WHO.

More than 15 billion are being subjected for the prevention by Punjab Government.

Mr. Iqbal, TFP Exec. Comm. Member being called to let us know the feedback of a Thalassemic parent, Dr. Jovaria Manna, Chairperson, Medical Advisory Board briefed us about scientific sessions and workshops of the next two days.

Dr. Jovaria informed us about Uniform Protocol, book on iron chelation therapy guideline which she has edited and being distributed all over Pakistan.

Mr. Iqbal told us about his blood bank and Thalassemia center, which is in Karachi and working successfully.

Address by Guest of honor Prof. Majeed Chaudhry, Principal, FJMC & Prof. Humayun Maqsood, Principal, FMCMD.

Both of them appreciated TFP’s work and event and and promised to support conference by all means.

Lt. Gen (R) Moin-ud-din Haider, President TFP thanked all for attending, requested for moral and monetary support for TFP and societies, told us about government being concerned in Thalassemia issue these days and gave shields to the mentioned below patients on their achievements.

1) Ayesha Murtuza from Abbotabad – LLB
2) Laiba Mukhtar from Lahore – 3rd position in Inter & 1st in I.COM
3) Master Abdul Samad – 5th passed Hafiz-e-Quran
4) Mujtaba Shareef – Hafiz-e-Quran
5) Miss. Atiya Kamran from Karachi – Inter pass, married
6) Mr. Ejaz Haider from Karachi – Volunteer for Fatimid
7) Ameen Tipu – Earning, married & have two kids
8) Usman – Hafiz-e-Quran

– End of day 1 –

Day 2: Patient Safety Awareness Workshop in Collaboration with World Health Organization – Fatima Memorial College of Medicine & Dentistry, Lahore

Started at 9:30 am with Tilawat-e-Quran, Dr. Yasmeen Rashid gave briefing over the workshop objectives; workshop was conducted by WHO on their World Alliance Of Patient Safety.

She briefed about iron chelation, transfusion, screening, hepatitis, aids, etc.

She even requested the NGOs to care about screening, cleaning and hygiene.

Later on Mr. Hussain Jafri briefed us about World Alliance of Patient Safety program.

WHO launched this program in October 2004.

Programs started under World Alliance:
1) Patients for patient safety
2) Patient safety research
3) WHO patient safety campaigns
4) Education and training
5) Implementing change

You can read about IAPO – International Alliance of Patients Organization at their website: IAPO

After Mr. Hussain, Dr. Jovaria came on dice to give us guidance over Patients Safety, she told us a patient should be aware of everything, he should ask the nurse while getting transfuse about screening, blood bag details, make sure that blood belongs to him, patient should get vaccination done, she even advice to get splenotomy done by good doctor not by any general surgeon.

After Dr. Jovaria, Question and Answer session was conducted, followed by panel-list of three doctors, three society member and three patients.

I was given the chance to be among the three patients, was given chance to brief over my activities and Thalassemia.com.pk, which got appreciated by all the people attending.

– End of day 2 –

Day 3: Prevention & Treatment of Hepatitis B & C of Patients Receiving Multiple Blood Transfusions – Fatima Jinnah Medical College, Lahore

Day 3rd was a bit hard to manage, as there were two things going on side by side at the same timings, one side conference over Hepatitis, other side scientific sessions over exjade, prevention & genetic counseling.

Not much new was being told, but there was a session which I wanted to attend badly and I have made notes of it, sharing it with you

Management of Pregnancy in Thalassemia Major – Dr. Yasmeen Rashid:

Patient who want to start new family should work hard to get her ferritin as low as 500, and must maintain her hemoglobin at 10 – 11 gram.

Pre Pregnancy Counseling:
Iron chelation is discontinued for 9 months

Pre Pregnancy Evaluation:
Cardiac, Liver, Vessels, Pancreas, Viral Infection, Iron Status – all things should be monitored closely.

During Pregnancy:
1) Iron should be around 300 to 500 for better health of baby.
2) Hemoglobin should be maintained at 10 – 11 gram.
3) Low blood transfusion, small quantity every 10 to 15 days to give enough oxygen to the body.
4) Vital signs should be monitored during transfusion.
5) Discontinue iron chelation.
6) Continuous check on ferritin level.
7) Cardiac monitoring every 3 months.
8) Endocrine function, oral glucose test should be done
9) Last but not the least, Best doctors!

Effects on the fetus if anything is wrong:
1) Fetal Hypoxia
2) IUGR
3) Premature Labor
4) Fetal Demise

Delivery:
One should wait for normal delivery to happen, but as it takes lots of efforts/energy so the patient should be monitored closely for cardiac functions.

In case of IUGR or Fetal distress cesarean should be performed.

Iron Chelation should be started within the first week after delivery.

– End of day 3 –

Program Guide: Day 1 , Day 2 , Day 3 a , Day 3 b

Pictures: 6th National Thalassemia Conference & Workshops

Note: I have made notes of my interested topics only, but I have attended almost every session… If you want to know about anything kindly drop a comment I will try to respond as soon as possible… But to be frank there wasn’t much new knowledge to hear.


Genetic and bio-technology conference held

December 24, 2009

Courtesy by: gulfnews.com

A large population of the UAE suffers from genetic disorders, including common ailments like diabetes, high blood pressure and thalassemia, which affect one in 12 people in the country

Dubai: The first genetic and bio-technology conference opened here on Monday with experts warning that the world is being challenged today by serious diseases and viruses that threaten our communities.

The event is organised by the UAE Genetic Diseases Association, in partnership with Yamaguchi University, Japan, Zayed University and DuBiotech.

“This event is all about inspiring students to think creatively about science and society, and to see themselves as part of a global community of practitioners working in similar fields,” said Dr. Michael Allen, Dean of the College of Arts and Sciences at Zayed University.

He said genetics and biotechnology is still a burgeoning field in the UAE.

A large population of the UAE suffers from genetic disorders, including common ailments like diabetes, high blood pressure and thalassemia, which affect one in 12 people in the country.

Dr Sulaiman Al Jassim, Vice-President of Zayed University, said the conference will help raise awareness on prevention and treatment methods of these diseases.

Graduate and post graduate students from the Zayed University, Higher College of Technology and Manipal University are taking part in the day-long conference.

Common genetic disorders in UAE

  • Diabetes
  • High blood pressure
  • Obesity
  • Birth Defects
  • Cancer, such as breast cancer
  • Leukaemia (1 in 12 in UAE has this)
  • Thalassemia
  • Alpha Thalassemia
  • Sickle-cell anaemia
  • G6PD (not enough of enzyme glucose 6 phosphate dehydrogenase)

New dates for National Thalassaemia Conference

December 10, 2009

New dates for National Thalassaemia Conference have been announced by Thalassaemia Federation of Pakistan (TFP).

6th National Thalassaemia Conference and Workshops will now be organized from 17th to 19th of Dec, 2009 at Fatima Memorial College of Medicine and Dentistry, Shadman Colony, Lahore.

For further info about the conference, please contact TFP directly at their numbers: 042-5181549, 042-5181749.


6th National Thalassaemia Conference and Workshops

November 25, 2009

Thalassaemia Federation of Pakistan (TFP) is pleased to announce that the 6th National Thalassaemia Conference and Workshops will be organized from 12th to 13th of Dec, 2009 in Mirpur Azad Kashmir.

All TFP member societies, individuals and organizations are invited to participate in this conference.

In this regard, please revert to the following:

1) Federation will sponsor three individuals from each TFP member society and they will include 01 Patient, 01 Parent and 01 Representative of your society. It is requested to send those participants who have not previously attended the conference so that more and more people are provided the opportunity to participate in the conference. Deadline for conference registration is Dec 5, 2009.

2) Economy fare Train/Bus along with accommodation will be given by Federation.

3) TFP will provide accommodation on triple sharing basis (one room per society) for two nights.

4) TFP has decided to honor extraordinary Thalassaemic children. In this regard, please send us the name of one Thalassaemic child from your society, who have done exceptionally well in academic, sport or extracurricular activities by November 24, 2009. This record will be presented to a committee who will finalize the names of the children to be honored.

5) Federation also plans to publish a news letter which will be distributed in the conference and for that we request you to kindly email a write-up of your society’s activities since the last Thalassaemia conference in Karachi by 24th Nov, 2009.

6) Societies that have not submitted their TFP membership dues up to 2009, are requested to submit the dues before 24 Nov 2009. Please note that societies not paying their memberships dues by the given date will not be provided the above mentioned services.

7) Non members of TFP, kindly email or call TFP office for more information on how to attend the conference.

Details: tfp.org.pk


%d bloggers like this: