Afrikaanse weergawe/This site in Afrikaans

What is SAMSO?

The South African Marfan Syndrome organisation is a registered nonprofit organisation for the benefit of those with Marfan Syndrome, their families and doctors in South Africa (and throughout Africa/Middle East).

Aims

• to enable sufferers to make contact with other sufferers for mutual support and encouragement.
• to make known the latest developments in research into the disorder.
• to make known the latest developments in treatment of the disorder.

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Membership

• receive an Information Pack about Marfan Syndrome and SAMSO on first joining;
• receive "Connections/Bindings" 4 to 6 times per year (This SAMSO newsletter contains the latest information about Marfan Syndrome and how to cope with it.);
• can attend meetings to learn more about Marfan Syndrome, ask questions and meet other families with the disorder;
• can attend lectures, or receive notes from lectures;
• can order brochures, medical reports and books about Marfan Syndrome for the price of photostating and postage;
• can request specific information about Marfan Syndrome from SAMSO, by phone or letter (If the answer is not available, international experts are consulted on the member's behalf.);
• can receive free genetic and/or psychological counselling from SAMSO by appointment, phone or letter;
• can have a say in the direction and management of SAMSO by attending meetings or by phoning/writing.

Costs
Yearly subscriptions are R50 and all donations are very welcome
People who cannot afford subs, or even a small donation, can ask to remain on the mailing list as subsidised members.

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Information

• Marfan Syndrome - Description
• Books and pamphlets