South African Marfan Syndrome Organisation     Suid-Afrikaanse Marfansindroom Ondersteuningsgroup  
     
 

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 Membership Information
  Contact Details Donations Office Bearers

 

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.

Back to the top

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.

Benefits
Members of SAMSO benefit in the following ways:
  • 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.

Back to the top

Information

  R = recommended RR = highly recommended
  No. Title Price
  SAM/001 Marfan Syndrome - Fact Sheet/Marfansindroom - Inligtingstuk * Free/* Gratis
  SAM/002 Marfan Syndrome - Introduction/Marfansindroom - Inleiding * Free/* Gratis
SAM/003 Genetic Counselling Issues - Prof A Christianson R 0.40
R SAM/004 Eye Concerns in Marfan Syndrome - Prof T Carmichael R 1.60
R SAM/005 The Marfan Heart - Dr D Smith R 0.80
R SAM/008 Palpitations in Marfan Syndrome/Hartkloppings in
Marfansindroom - L P Higgs
R 0.80
RR SAM/009a

The Marfan Syndrome Handbook - L P Higgs
ISBN 0-620-27642-8

R50.00
(R27 for SAMSO members)
  SAM/009b Die Marfansindroom Handboek - L P Higgs
ISBN 0-620-29490-6
R50.00
(R27 vir SAMSO lede)
  SAM/011 Herbal Remedies and Supplements - from Connections/Bindings R 0.80
R SAM/012 Exercise - from Connections/Bindings R 0.80
R SAM/013 Aneurysm and Dissection - from Connections/Bindings R 1.60
R SAM/014 Treatment/Behandeling - from Connections/Bindings R 2.40
R SAM/015 Parenthood/Ouerskap - from Connections/Bindings R 0.80
R SAM/016 Diet/Dieet - from Connections/Bindings R 0.80
R SAM/017a Children and Teens with Marfan Syndrome - L P Higgs R 1.60
SAM/017b Kinders en Tieners met Marfansindroom - L P Higgs R 1.60
R SAM/018 Medical Schemes/Mediese Skemas - from Connections/Bindings R 0.80
R SAM/019 Genetic Counselling/Genetiese Berading - from Connections/Bindings R 0.80
SAM/020 Losartan Research R 0.80
R SAM/021 Lungs and Chest/Longe en Borskas - from Connections/Bindings R 1.60

 


* Sent to members on joining

  • Technical Information - contact SAMSO for catalogue of medical journal papers
  • Ordering - send an order with a crossed cheque, payable to SAMSO, for the price of the article plus postage.
Postage: Orders up to R12.00 R4.80
  Orders over R12.00 R6.00

Back to the top

Contact Details

Postal address:

SAMSO
P O Box 12895
Queenswood
0121
South Africa


Telephone: Monday & Wednesday only (012) 333-3894, (International +27 12 333 3894)

Office hours: Monday - 9am to 8pm, Wednesday - 9am to 5 pm ONLY

Fax: 086 675 7710

e-mail:
admin@marfan.org.za - business and administration
info@marfan.org.za - information
web@marfan.org.za - webmaster (Richard Higgs)
chair@marfan.org.za - chair (Lorna Higgs)

Back to the top

Donations

We welcome donations to SAMSO for the running of the support group, administration, support of members who cannot afford membership and the maintenance of this website. Donations can be made to our bank account. Please contact us for details.

NB: Please send the deposit slip to SAMSO so that we can send you a receipt.

Office Bearers

Committee 2010
Chair: L Higgs
Members: R Higgs(webmaster)
M Taffara
H Cloete
J Cloete
S Kruger
M Bekker
M Minnaar
K-L Smit

Trustees 2010
L Higgs, S Kruger, M Minnaar


Auditor
D P S Badenhorst - AUDITSA

Back to the top


Home SAMSO News Marfan Syndrome Definitions Warnings FAQs Diagnosis Tool Links Sponsors

Tuis- blad SAMSO Nuus Marfan- sindroom Woorde- skat Waar- skuwings Vrae en Antwoorde Diagnostiek Program Skakels Borge