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Organizations
International Marfan Syndrome Organizations
International Federation of Marfan Syndrome Organizations
Address: C/O National Marfan Foundation
22 Manhassett Avenue, Port Washington, NY 11050
United States
Website: http://marfanworld.org/
The International Federation of Marfan Syndrome Organizations (IFMSO) was formally founded in 1992 at the Second International Symposium on the Marfan Syndrome in San Francisco, California.
The purpose of IFMSO is to:
• Share current, accurate information about the Marfan syndrome worldwide and facilitate international communication among medical professionals and the general public.
• Establish standards for diagnosis and treatment of the Marfan syndrome.
• Support and foster research throughout the world and facilitate communication with research centers and researchers worldwide.
National Marfan Foundation (US)
Address: 22 Manhasset Avenue
Port Washington, NY 11050
United States
Telephone: 1-800-8-MARFAN ext 10 (1-800-862-7326)
Website: http://www.marfan.org/
The National Marfan Foundation is dedicated to saving lives, and improving the quality of life for individuals and families affected by the Marfan syndrome and related disorders.
Together with our National Volunteer Network, including Chapters, Support Groups and other local contacts, we disseminate accurate information, provide support and foster research.
Canadian Marfan Association
Address: Centre Plaza Postal Outlet
128 Queen St. South
P.O. Box 42257
Mississauga, Ontario, L5M 4Z0
Canada
Telephone: 1-866-722-1722
Website: http://www.marfan.ca/
The Canadian Marfan Association, was founded in 1986 by Elizabeth McHenry and Marfan patients and physicians. Its purpose is to: increase public awareness of Marfan Syndrome; provide accurate, timely information about the condition to affected patients, their families and health care personnel; encourage the establishments of Marfan self-help groups in communities across Canada; and support and foster research.
Marfan Association UK
Address: Rochester House
5 Aldershot Road
Fleet, Hampshire
GU51 3NG England
Telephone: +44 (0)1252 810472
Website: http://marfan.org.uk/
"The Marfan Association UK was officially founded in 1984 to offer:
"Support For Today with Tomorrow in Mind"
Our three main aims are: SUPPORT, EDUCATION AND RESEARCH
We support those with Marfan Syndrome and their families. We are aware that the unaffected family members may also need help to "come to terms with MFS".
We educate by distributing updated Marfan text to lay and professional sectors, holding and participating in School and Hospital meetings around the country. Early diagnosis is vital and we believe this will be achieved by spreading information "far and wide". A publications list is available covering the many aspects of MFS.
We research by undertaking, sponsoring, and participating in, national research projects.
Already the gene has been discovered. "
Marfan De México
Address: Paseo de Lilas 92 Loc. 58, Suite 143
Bosques de Las Lomas
México, D. F. C.P. 05120
Telephone: (01-55) 22-24-40-05
Website: http://www.marfan.org.mx/
"Our goals are:
To provide general information on this condition to patients, family members and doctors.
To provide means to patients and family to share their experiences, mutually support each other and improve medical care.
To support and augment research."
South African Marfan Syndrome Organisation
Address: SAMSO
P O Box 7294
Pretoria
0001
South Africa
Telephone: +27 12 333 3894
Website: http://www.marfan.org.za/
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.
Fundação Marfan Brasil
Address: N/A
Telephone: (55-11) 3887-9168
Website: http://www.marfan.com.br/
The Fundação Marfan Brasil - (Brasil Marfan Foundation) has as its mission to improve the quality of life of sufferers, divulge information to individuals, family members and health professionals about Marfan Syndrome and related disorders and to divulge the latest scientific advances in treating the effects of the syndrome in patients as well as its future cure.
This group involves people from various areas in healthcare such as doctors, nurses, physiotherapists and psychologists. It aims to offer a common and full approach to patients and their families who are affected by Marfan Syndrome.
The National Association for Marfan Syndrome in Denmark
Address: Landsforeningen for Marfan Syndrom
Tamsborgvej 1, 2.th.
3400 Hillerǿd, Denmark
Telephone: +45 48 26 36 52
Website:
"The National Association for Marfan Syndrome in Denmark was established in 1991. We have today as members about 140 persons with Marfan Syndrome.
The Danish Association arranges 2 weekend courses every year. Our courses are a mix of professional contents and social gathering. There has for example been a course based on the theme "Eyesight", another with "the Body" and about "the pains" etc. We arrange courses especially for youth and for children, their parents and grandparents. Furthermore we have three times arranged 1 weekly folk high school course.
In 1996 we celebrated the 100 year of the first account of Marfan Syndrome by having a conference at the Parliament building in Copenhagen. There were 225 participants, of whom 130 were professionals. There were 8 professional introductions followed by a panel debate concerning the centralisation and coordination of the treatment of Marfan Syndrome in Denmark. This day was a big success for the Danish Association. In 2001 we celebrated our 10 year jubilee in the same way."
Finnish Marfan Association
Address: PO Box 1328 SF-00101
Helsinki, Finland
Telephone: +35 894 17 17 27
Website: http://www.marfan.fi/
Association Française du Syndrome de Marfan (A.F.S.M.)
Address: 13, Allee des Terasses F-77200 Torcy France
Telephone: +33 164 62 03 75
Website: http://www.vivremarfan.org/
The French Association of Marfan Syndrome, created in 1995, works in connection with its scientific and medical council, which gathers the specialists concerned with this genetic disease: genetics, biology, cardiology, cardiovascular surgery, sporting medicine, ophthalmology, endocrinology, pediatrics, dermatology, orthopedics and psychology. To date, the board of directors of the AFSM contains 15 volunteers each having his own "specialty". Paulette Morin, president of the AFSM, is also spokesperson of the Alliance of rare Diseases, a gathering of a great number of associations for genetic diseases.
Marfan Syndrome Support Group Ireland
Address: 78 Whitehorn Drive Palmerstown, Dublin 20 Ireland
Telephone: 01-623 9563
Website: http://www.marfan.ie/
Founded by group of people who are directly affected by Marfan Syndrome, to provide support to one another and a means for patients and relatives to share their experiences. It is estimated that there are approximately 1000 people in Ireland who have Marfan Syndrome. The Support Group was also set up to provide information and create awareness about this condition for patients, relatives, doctors, physicians and the wider community.
Name: Associazione Vittorio
Address: Strada alla Villa d'Aglié 23/3 I-10132 Torino Italy
Telephone: +39 118 98 09 95
Website: www.marfan.info
The Vittorio Association for Marfan Syndrome, founded in January 1994 in Turin, is a voluntary nonprofit association with the mission of distributing accurate and timely information to individuals diagnosed with this disease and their families. They also work with the medical centers for a timely diagnosis.
Polish Marfan Association
Address: Swietojanska 49/17 PI-81-391 Gdynia Poland
Telephone: +48 60128 6245
Website: http://www.marfan.pl/
"With satisfaction I would like to inform you, that at the end 1995 we instituted in Poland the first Marfan Association. Its full name is the Association of Families whose members are affected by Marfan Syndrome "Help Our Children". The goal of our association is to find as many people as possible affected by Marfan Syndrome. We try to create a complete system of diagnosis, therapy, rehabilitation and professional knowledge about it. By publishing announcements in newspapers, broadcasting TV, and radio programs we try to inform the society about its existence. We try to make people aware of its danger. We ask all the organizations and individual sponsors to help our patients."
Swedish Marfan Association
Address: Svenska Marfanföreningen
c/o Ulla Frick
St. Eriksgatan 50 A
112 34 Stockholm
Website: http://www.marfanforeningen.se/
The Swedish Marfan Association was created in 1993 by doctors and patients. The purpose of this association is to:
• offer support to affected people and their relatives
• contact them to find out their needs
• work for their interests with the authorities and institutions
• spread knowledge about the syndrome
• promote research about the syndrome
• keep contact with other Marfan associations around the world
• keep contact with other disability associations.
The association consists of patients and relatives and has about 135 members.
Marfan Hilfe
Address: Marfan Hilfe (Deutschland) e.V.
Postfach 0145
23691 Eutin
Germany
Telephone: 0700 22 33 4000
Website: http://www.marfan.de/
Slovak Marfan Association
Address: Dr. M. Dušinská
Institute of Preventive and Clinical Medicine
Limbova 14
833 01 Bratislava
Slovakia
Telephone: +421 2593 69270
Website: http://members.fortunecity.com/marfan/marfansynd.htm
The Marfan Association was founded in 1993 as a voluntary nonprofit organization with main objectives:
1. Associate patients, relatives to share experience, support one another, improve their medical care, provide mutual communication.
2. Distribute accurate and recent information about Marfan syndrome to patients, relatives, doctors and to others.
3. Provide advisory service to patients and relatives.
4. Organize activities to improve medical care for patients with Marfan syndrome or similar heritable disorders.
5. Organize seminars, conferences, courses with domestic and international participation.
Association Belge du Syndrome de Marfan
Address: Rue Résidence Air Pur 27A
4623 Magnée
Belgique
Website: http://www.marfan.be/
The Belgium Association for Marfan Syndrome was founded in 1999 by patients and their families. The organization’s goal is to inform the public and the medical community about Marfan Syndrome and support affected individuals and their families.
Marfan Peru
Address: Manuel Vizcarra Barton
Calle Arica 180 - Miraflores.
Lima, Perú
Telephone: (511) 447 1717 anexo (1000)
Website: http://www.marfanperu.org/
"APSIM is an association established in 2005 that supports people with Marfan Syndrome. It consists of patients, relatives, friends, doctors and heath care workers who have united to improve the quality of life for Marfan Syndrome patients. We are a Peruvian Association that wants to help and promote knowledge of this disease."
Contactgroep Marfan Nederland
Address: Prof. Bronkhorstlaan 2
3723 MB Bilthoven
Postbus 132
3720 AC Bilthoven
Netherlands
Telephone: 030-659 46 55
Website:
http://www.contactgroepmarfan.nl/client/6/?websiteid=6&contentid=107
The patient association contact group Marfan the Netherlands (CMN) was established in 1982 by a group patients. CMN wants to spread the word about Marfan Syndrome. The site provides a lot of information about Marfan Syndrome and the activities of the contact group Marfan the Netherlands. The objectives of the contact group are to support people with Marfan Syndrome and their families and inform people about the disorder.
Marfan Network Japan
Address: Yoko Shimozaki Marfan Network Japan Higashi-nakashinjuku 2-1-23 Kashiwa, Chiba Japan
Telephone: 81-4-7169-3484
Website: www.marfan.gr.jp/
The website for this Japanese Marfan Syndrome organization is in Japanese.