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On Thursday 17 April South Africa, along with other nations, marks World Haemophilia Day.

Open days and public events are being held during the course of this week at haemophilia centres and units in Cape Town, Eastern Cape, Limpopo, KwaZulu-Natal and Johannesburg.

These events are intended to raise awareness - among health workers and the public - of the substantial problem of undiagnosed haemophilia.
* One out of 10 000 males is expected to be born with haemophilia, which is a lifelong condition.
* Yet the total number of people with haemophilia on the South African Haemophilia Foundation register falls substantially short of the expected number of cases.

In November 2001 the Minister of Health endorsed the work of the South African Haemophilia Foundation and since then a partnership has developed between Government and the Foundation. It focuses on achieving the Haemophilia Care Comprehensive Programme for South Africa.

This programme of outreach and referral enables all persons with haemophilia to have equitable care, by means of the following processes.
* Any person with haemophilia can be referred to a recognised Comprehensive Care Centre or Regional Unit for assessment and the development of an individualised treatment plan.
* After this, the individual is referred back to a provincial health service or local hospital.
* The specialist at the Care Centre then finalises the treatment plan for the individual in conjunction with the provincial health service. Among other things, a decision is made as to where the individual will receive the necessary blood product to assist blood clotting.
* All eligible people with haemophilia are on a home treatment programme and, where necessary, are financially assisted in order to reach Care Centres.

Patients from historically disadvantaged communities are the main beneficiaries of this comprehensive approach to haemophilia.

"As more patients are effectively treated, according to standard treatment guidelines, and as this care extends across the country, we are sure to see a reduction in disability and death due to undiagnosed and untreated haemophilia," says Dr Eddie Mhlanga, head of Maternal, Child and Women's Health in the Department of Health.

* Initially four Comprehensive Care Centres were established in Johannesburg, Durban, Cape Town and Bloemfontein.
* Three additional units have since been added, in Port Elizabeth, East London and Pholokwane.
* Last year 29 nurses from South Africa and SADC countries were trained in haemophilia care, including community outreach designed to identify and motivate patients to come for treatment at the Comprehensive Care Centres.

The World Federation of Haemophilia (WFH) has been very supportive of this programme.

The Federation this year celebrates 40 years of care and will be marking this anniversary by launching the Global Alliance for Progress in Haemophilia. This project, which has a 10-year lifespan, will focus on 40 developing countries with a view to increasing the number of people diagnosed with haemophilia and able to access treatment.

Contact persons for details of local awareness events

* Johannesburg: Sr A Gillham, 011 787 6710, Sr Bongi Mbele, 082 210 0562, 011 488 3294
* Durban: Sr Dolly Nkosi, 083 265 5248
* Limpopo: Sr Pricilla Adolf, 082 474 5144
* Western Cape: Sr AL Cruickshank, 082 788 1038
* Eastern Cape PE: Sr A De Klerk, 084 551 3829
* Eastern Cape EL: Sr Sindiswa Sogcwe, 043 709 2370

Contact persons for the national programme

* Dr Eddie Mhlanga, Head of Maternal, Child and Women's Health, Department of Health, Tel: 083 459 6112 (Leave a message; calls will be returned)
* Dr Busi Madolo, Head of the Human Genetics Unit, Department of Health, Tel:082 338 0824 (Leave a message; calls will be returned)
* Sr Anne Gillham, National Haemophilia Nurse Co-coordinator, Haemophilia Foundation, Tel: 011 787 6710/ 083 225 9850

On the 17th of April the World Federation of Haemophilia will post a news release on www.wfh.org announcing the launch of the Global Alliance for Progress project.

Issued by the Department of Health, 14 April 2003
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