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Our humble begining

Hemophilia society of maldives

Mr. Ahmed Naseer

President & Founder HAEMOPHILIA Society of Maldives

Elected as president on 25th February 2019

Mission

“ The hemophilia society of Maldives strives to improve the quality of life, support advocacy, educate, and awareness efforts that build and sustain community for families and individuals affected by haemophilia, von Willebrand disease, other coagulation disorders, and related complications ”

Vision

“ become the recognized voice and go-to facility in the Maldives for those affected by a bleeding disorder ”

Key Objectives

  1. IMPROVE QUALITY OF LIFE - Act as an instrument and facilitator of aid between Hemophiliacs and their families in view to improve quality of life
  2. EMPOWER TO SUCESS - Engage, encourage, educate, and enable hemophiliacs to live a normal life, exploring their true potential, empowering them carriers to become and lead a successful life.
  3. COMPREHENSIVE ACCESS TO HEALTH CARE - Monitor and respond to an evolving healthcare system, and advocate for comprehensive access to health care services of people with bleeding disorders.
  4. HEMOPHILIC REGISTER - Maintain a registry of patients with hemophilia and other bleeding disorders in the Maldives 
  5. EXCHANGE KNOWLEDGE FOR AN EFFECTIVE SOCIETY - Conduct an active information and knowledge exchange amongst hemophiliacs, healthcare providers and keep updated with latest in therapeutic, or medical breakthroughs, and compose periodicals to help improve public awareness in view for an effective hemophilia managed society.
  6. RESEARCH - Encourage research in all fields related to hemophilia and related rare bleeding disorders.
  7. STRATEGIC RELATIONSHIPS - Promoting and maintaining relationships with world hemophilia society and other related patient’s organizations
  8. CONSTRUCTIVE DIALOGUE  - Keeping and promoting constructive dialogue with healthcare professionals, government institutions, and pharmaceutical industry.
The worldwide incidence of haemophilia is not well known, but estimated at more than 400,000 people. Approximately 75% of people with hemophilia around the world still receive inadequate treatment or have no access to treatment
The Hemophilia Society of Maldives was established on 8th August 2011. First activity of the Society was to mark the World Haemophilia Day 17 April 2012 first time in the Maldives. The Event has been held at the open ground of Social Centre in Male’ on 18 April 2012 from 4 to 6pm. The Special Envoy of the President of Maldives His Excellency Dr.Mohamed Waheed Hassan was the Honorable Minister of Health Dr. Ahmed Jamsheed.
Mobirise

It was invited to high level dignitaries of 250 from all level of the society including former Ministers and current Minister as well as diplomatic mission in the Maldives including WHO and the United Nations.

6 Haemophiliacs and their families from S. Atoll, HDH Atoll and Male’ Atoll were present and their trip to Male’ was financed by Hemophilia Society of Maldives with assistance from State Trading Organization.

Haemophilia results from a missing or deficient protein needed for blood clotting. The two forms are haemophilia A (factor VIII deficiency) and haemophilia B (factor IX deficiency)

The event began with reading noble Qur’an and the speech of the President of World Federation of Haemophilia 'Mark Skinner' was read out by Dr. Ahmed Razee the President of Haemophilia Society of Maldives followed by a speech of Mr. Ahmed Naseer Vice President of the Society. Followed by expressing the heartfelt feelings of the Mother of one of the little Haemophiliac a family with 4 haemophilic boys of the oldest boy died with bleeding in his tongue some years ago.

The Event was sponsored by OSOTSPA Co of Thailand _ Owners of SHARK Energy Drinks.

The objective of the event was to create awareness of HAEMOPHILIA. “Haemophilia” shall include Haemophilia A, Haemophilia B, Von Willebrand’s Disease, other acquired and hereditary disorders of hemostasis and coagulation.

Mobirise

In July 2012 The World Federation of Haemophilia had donated 128 FactorIIIV injection to the Maldivian Haemophiliacs (worth USD.25,000.00) which is now available at IGMH, S. Hithadhoo Hospital and HDH. Kulhudhuhfushi Hospital

 This event paved the way of the visit of Dr. Alok Srivastava Vice President of Medicals and Mr.Robert A. Leung Regional Program Manager, World Federation of Haemophilia, responsible for managing activities in the Asia and Western Pacific Region visit Maldives from 25 and 27 August 2012

On 26 August 2012 Hemophilia Society of Maldives organised a seminar to the Medical staff at IGM Hospital from 11am to 1pm (followed by a lunch) with Dr. Alok Srivastava and Mr. Robert A. Leung also held a Haemophilia Clinic which was attended by 6 Haemophiliac, their families and the medical staff of IGMH. These activities were supported by the Ministry Health.

The Event at IGMH was possible and to bring those Haemophiliacs to Male’ was partly financed by State Trading Organization. One Doctor from S. Hithadhoo Hospital and

One Doctor from HDH Kulhudhuhfushi Hospital participated in the seminar and the Haemophilia clinic. The return air tickets of the Doctors were facilitated by the Inland Aviation and board and lodging was paid by the Ministry Health.

With a request from the Minister of Health Dr. Ahmed Jamsheed, Dr. Alok Srivastava Vice President of Medicals and Mr. Robert A. Leung visited the National Thalassemia Centre and the National Blood Transfusion Services and met the officials of the both institutes. 

On 27 August 2012 the HSM & WFH team visited to the Ministry Health from 10 to 12am for the official discussion. The Minister of Health gave a careful hearing to our request for providing adequate CFC for PWH in the Maldives and also the need to train healthcare personnel in haemophilia care.

Mobirise

The Hemophilia Society of Maldives will endeavor in every means to make awareness and continues with their campaign in service the community of Hemophilia A, Hemophilia B, Von Willebrand’s Disease, and other acquired and hereditary disorders of haemostasis and coagulation.

He confirmed the commitment of the Government of Maldives to both these issues. The visit also initiated the process for the Ministry of Health to get help from the Christian Medical College of Vellore, India to sign an MOU to facilitate training of Maldivian medical personnel at Christian Medical College, Vellore, India.

This meeting also paved the way in the near future the Government of Maldives to make available for the Haemophiliacs for their badly required FactorVIII injection without which they will not survive without great pain in their bleedings.

The World Federation of Haemophilia together with Hemophilia Society of Maldives has offered the Government of Maldives to recruit one Physician, one Physiotherapist and two Lab technicians to be further trained at the Christian Medical Collage of Vellore, India in specializing, in the treatment of Haemophilia in the Maldives. Namely, the following medical staff will be trained at CMC. Dr. Ahmed Faisal - Senior Registrar in Pediatrics, Dr. Aishath Mahfooza - Principle Physiotherapist, Mr. Junaid Mohamed - Laboratory Technologist at IGMH Ms. Shifa Ibrahim - Laboratory Technologist from National Thalassemia Centre

The Hemophilia Society of Maldives will endeavor in every means to make awareness and continues with their campaign in service the community of Hemophilia A, Hemophilia B, Von Willebrand’s Disease, and other acquired and hereditary disorders of haemostasis and coagulation.

Mobirise

Factor Donations

We thank our partners and associates for helping us equip much needed factor injections

NAME OF DONATOR YEARBRANDQTYIUTOTAL IU
World Federation for Hemophilia [WFH]2012HUMATE - P VIII128271 34,688
World Federation for Hemophilia [WFH]2013BERIATE - VIII19425048,500 
World Federation for Hemophilia [WFH]2014KOATE-DV VIII, KOATE-DV VIII
1202401,402,200 
World Federation for Hemophilia [WFH]2015HAMOCTIN (BIOTEST) VIII
102000200,000
World Federation for Hemophilia [WFH]2016HAMOCTIN (BIOTEST) VIII, ALPROLIX (BIOTEST) IX
100250450,000
World Federation for Hemophilia [WFH]2017ELOCTATE (BIOTEST) VIII
7210501,100,000
World Federation for Hemophilia [WFH]2018KOATE-DV VIII
4056050,000
World Federation for Hemophilia [WFH]2019

KOATE-DV (GRIFOLS) VIII,ALPROLIX (BIOGEN) IX,AFSTTYLA 1000 (CLS-BEHRING) VIII 

2001000 1,925,000 
TOTAL IUs5,210,388
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Timeline

Haemophilia Society of Maldives

Providing information and assistance to hemophiliacs and their families Since 2011

2011

Mr. Ahmed Naseer

Helping people with bleeding disorders, hemophilics like himself in Maldives

2011

Haemophilia Society of Maldives was founded

Register for Hemophilics in the Maldives was created
Established a hotline for information and during emergency

2012

Haemophilia Society of Maldives organised its 1st Official seminar

The seminar was focused to the Medical staff at IGM Hospital and was presided by Dr. Alok Srivastava Vice President of Medicals and Mr.Robert A. Leung Regional Program Manager, World Federation of Hemophilia, responsible for managing activities in the Asia and Western Pacific Region

HSM & WFH team visited to the Ministry of Health paved the way for Government of Maldives to make available for the Hemophiliacs for their badly required FactorVIII injection

initiated the process for the Ministry of Health to get help from the Christian Medical College of Vellore, India to sign an MOU to facilitate training of Maldivian medical personnel at Christian Medical College, Vellore, India.

The World Federation of Haemophilia had donated 128 FactorIIIV injection to the Maldivian Hemophiliacs

2013

Received 194 Factor VIII injections

additional donation of 194 injections through the Italian Hemophilia Society

Discussions to train medical staff and establish medical care for Hemophiliacs at ADK Hospital begain with support from WFH

2014

Hemophilia awareness workshop focused towards medical staff(s),patients & families held at Social Centre
seminar hall

Presentations were given by Dr. Abdulla Niyaf and Dr. Aishath Mehfooza. Dr. Abdulla Niyaf presented helpful information necessary for awareness about hemophilia. Dr. Aishath Mehfooza presented information about how hemophilia patients can maintain and strengthen their muscles and joints through physiotherapy and other exercises.

Hemophilia Society of Canada donated 332 factor VIII injections

Hemophiolia Society of Maldives became the 128th associate member of the World Federation of Hemophilia

Participated at the World Hemophilia Congress at Melbourne, Australia

2015

Conducted a poster campaign to educate community on Hemophilia & how to manage a paitient

Donated 255 factorVIII injections to 9 hemophilics in the Maldives

Hemophilia Society of Germany donated 200 factorVIII injections 

2016

New developments include receiving 250 injections of factor IX for Hemophilia B paitients - a Generous donation by Hemophilia Society of America and

To mark World hemophilia day the Society visited to conduct information sessions  targeted to education populations of Hulhumale', Hdh. Neykurendhoo, S. Hithadhoo, and visisted hospitals and staff treating hemophilics in the region
 

Received another 200 factor VIII injections from Hemophilia Society Germany

2017

Received another ELOCTATE (BIOTEST) VIII injections from Hemophilia Society Germany

2018

Hemophilia World Congress - Glasgow, Scotland

Attended By Mr. Ahmed Naseer, VP and Founder Hemophilia Society of Maldives

WFH Regional Workshop on Outreach and Data collection - Colombo 6-8 April 2018

2019

Basic Cogulation workshop 18/20 March 2019

Dr Alok visit to IGM hospital

WFH National Corgulation workshop 24/25 August 2019 @ IGMH

WFH visit to Hemophilia Society of Maldives and IGM Hospital Concluded by Mr. Alain Weil, President of WFH and Mr. Sachi, WFH Regional Manager South Asia & East Asia on 5th Novembeer 2019 

Our Past Presidents & Vice Presidents

The following individuals have contributed immensely to our foundation since inception

President of Hemophilia Society of Maldives

Dr. Ahmed Razee
2011 - 2014

President of Hemophilia Society of Maldives

Dr. Mohamed Ahmed Razee
April 2014 - February 2019

Former Vise President of Hemophilia Society of Maldives

Mr. Ahmed Naseer
August 2011 - February 2019

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