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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

• Only SAMSO members are entitled to:
  • information about every aspect of Marfan syndrome (we contact international experts if necessary),
  • genetic counselling,
  • psychological counselling,
  • information about specialists.
• A large membership gives SAMSO more credibility in attempts to negotiate benefits on behalf of Marfan patients with medical schemes, SARS, etc., and when we interact with the Department of Health, medical schools, etc.
• SAMSO struggles to continue to exist. We have minimal funds and lots of expenses:
  • to remain in contact with international researchers and experts (there are none in South Africa),
  • to subsidise membership for indigent members (on state pensions) so that they receive the necessary information and counselling,
  • to run awareness campaigns to ensure that more people learn that they have Marfan syndrome (lives are thus saved),
  • to inform doctors about our disorder,
  • telephone and other office costs.

• 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