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Marfan Support and Information in NSW |
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About MarfanS Health Issues Personal Resources & News Marfan Queensland
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dates shown are the dates when placed here
3sept10
- The Sun UK FaceBook photo saved my life (3sept10)
31august10
- PGD, or, Preimplantation Genetic Diagnosis
30august10
- exstent- recent ' wrap' for the expanding aorta. Also look in Index there for Patient Testimonials
27aug10
- Cohen Syndrome
the Melbourne Shuffle on - YouTube by a young man with hypermobility from Northern Queensland
25aug10
- Welcome to Holland- Words of Inspiration & Hope.
19aug10
Diagnosis and Management MarfanS
European Journal of Human Genetics 2007 a pdf. file - Adobe Reader is needed
2aug10
- Marfan research UK - RBHT /Royal Brompton & Harefield
27july
- Positive Exposure - Marfan & pictures with a smile. Rick Guidotti - Director
- Marfan World July 2010
- CHERI conference Supporting Motor Difficulties/Utilising New Technologies.
2&3 Sept10 at Westmead Hospital
- EARLY BIRD CONFERENCE RATE CLOSES 31st JULY 2010
- ABC and Atrial Fibrillation in Health & Wellbeing/Your Stories.
22july10 from NMF
- Star Telegram
20july10
- MedicineNet
19july10
- AAPOS, or, American Assoc. for Pediatric Ophthalmology and Strabismus and MarfanS.
8july10
- Dr.Dianna Milewicz - & research, including Beals syndrome
- Circulation AHAJournal
- NMF (pdf.file) and Revised Nosology for MarfanS per 1july10
2july10
- NMF - pdf.file, a new Marfan nosology per 1july10
1july10
- Institutobernabeu - Prenatal Marfan Diagnosis in Spain
- UCL University College London
29june10
- Clinical Trials Losartan in Paris
20june10
- Marfan Trust UK Spring Newsletter 2010
8june10
- Better Health Ramipril medication, anthypertensive meds
&
- emedicine - enalapril
5june10
- Kids Research at Children's Hospital Westmead
May10
- EDS Network May is National & International
Ehlers-Danlos Syndrome (EDS) Month.
And a rather sad video on YouTube
25may10
- Marfan research at CHW, which mentions Loeys Dietz Syndrome as well.
(last updated 9feb09)
7may10
- Research and Dr.Harry Dietz
- message from Heart Foundation Australia Heart Attacks Facts
3may10
- Qeensland Uni.of Technology and Children with Hypermobility
&
- Podiatrists and Joint Hypermobility Queensland
23april10
- Medic Alert
- The Doctors TV Com presentation " Stop it before it starts", which starts Thursday, 15april (US time).
14april
- Losartan in French / en Français, from Vivre Marfan
31march10
- Research opportunities Sydney Uni.
- Lesley Adès, artist, also paediatrician and geneticist.
&
- Art whats on
26march10
Just a bit of a repeat -
- Marfan Centre John Hopkins Medicine
18march10
- ABC (Australian) Will sea water help heal sores ?
12march10
- Atenolol v Losartan in Alicante / Spain, with some very high Marfan profile doctors present. Unfortunately in Spanish only sofar.
- A location in Alicante
" We managed to have the presence of four great doctors of the highest international standing: Dr. Hal Dietz (Johns Hopkins University School), Dr. Francesco Ramirez (Mount Sinai School of Medicine), Dr. Alberto Forteza (Marfan U. Doce de Octubre Hospital) and Dr. Artur Evangelista (U. Marfan Hospital Vall d'Hebron)"
- Cleveland Clinic and Chat Online, with Q & A about Marfan Syndrome.
24feb10
- Pulmonary Artery Atresia
21feb10
- Marfan Victoria - news December 2009, a pdf.file , on which you'll also find the link to Paul Newman's Own
19feb10
- my inova com and TEE procedure
12feb10
- Medical Net
- Washington University Physicians
- Astrid Lindgren Children Hospital, Stockholm
5feb10
- Marfan Symposium August 2005 Musculoskeletal Aspect of Marfan / Orthopedic Research
5feb10
clip of In My Hands looks like a good documentary on MarfanS. An interview Rosie from Siriusxmstars has with the producer of the Documentary.
4feb10
(for women)
- Endometriosis
- Sports of the times- remembering Flo Hyman
1feb10
- Marfan Trust UK Sonalee Laboratory
27jan10
- Marfmom on Word Press & Shoddy Journalism
and from there -
- www.timesonline.co.uk/tol/news/science/genetics/
- www.timesonline.co.uk/tol/news/science/genetics/article6999861.ece
- www.timesonline.co.uk/tol/life_and_style/health/article6613142.ece
and karyomapping, or perhaps a chunk of the DNA ladder inherited, instead of accurate mutation
26jan10
- Kids Health
14jan10
- early surgery with Loeys-Dietz Syndrome
- cerebral aneurysm consultation, on YouTube.
2010
- Lyons International ER and Paramedics (or - Message in a Bottle)
- Marfan petition in UK, for the British Prime Minister.
18dec09
- Drug company - losartan potassium//cozaar
16dec09
- MedicineNet on Loeys-Dietz, Marfan, EDS Syndromes
3dec09
- eMedicine and MarfanS
- Independent online news and MarfanS.
24nov09
- Hallway Media- "responsible" for Just Growing Pains ? the Marfan awareness film
- C R Y & MarfanS
- Marfan Victoria Newsletter Aug.2009
Children and Teens including school, physical activities.
&
Fact sheet about Marfan Syndrome, from the Nat.Marfan Foundation, USA.
21nov09
- Visual Impairment with MarfanS - V.I.Scotland (Uni.of Edinborough)
18nov09
- NCBI & there's more to Marfan
- NMF and Beals syndrome
15nov09
- Australian Story - Heart of the Matter - transcript
8nov09
- You Tube - World Wide Candle Lighting
2nov09
- Sleep study
- Hopkins Medicine and Marfan Syndrome
29oct09
YouTube Did you know I have Marfan Syndrome ?
19oct09
- On Insight, presenter Jennie Brockie, this pm, a repeat from last Tuesday evening apparently.
About genetic disorders, genetic testing, insurance.
Prof.Ron Trent was present and some other medicos
A couple of people said they wouldn't have themselves tested, it wouldn't be helpful living with the disorder.
On SBS if you're interested, you can either watch the episode or find the transcript.
5oct09
- Ian puts his best foot forward in memory of a close friend
&
in South Australia
- Legally Red on pdf and the section Inspirational client, Trish Carey, who walked for Marfan awareness
sept09
Stefano Association Bambini & Marfan with a message about the 5th Italian Marfan congress on September 19th in Pavia - nice looking website, but in Italian
16sep09
- aneurysm and aortic surgery
- NMF TeenSpace/ Photo Contest
Laurier Tiernan - in Tokyo.
- You Tube. Laurier not long after aorta surgery.
Also takes part in-
- Worldsing Competition
14sep09
- Marfan Victoria August news -on pdf.file
7sept09
- Sunderland Echo Liam Gash
4sept09
- IFMSO and Newsletter
including next item -
- In My Hands a Marfan Documentary
- New anticoagulant dabigatran
A more stable anticoagulant ? from the Dutch news NOS journal. The reporter, said 44 countries had taken part.
In the Netherlands - 1200 people from 30 Dutch hospitals had taken part. Users apparently had fewer haemorrhages/bleedings, conseqently fewer strokes. Also worked well for those with cardiac arrhythmia's.
Apparently had been used for hip and knee operations, according to the tv reporter.
28aug09
- NMF and RENT
23aug09
- Marfan Research Group at Westmead, down the bottom of the page - was updated February 2009
24july09
Health updates from ABC included aneurysm repair this time, in this case performed mainly on older people, but also mentions genetic inheritance of aneurysms.
- Health Report as on 20july09
Dr.Norman Swan interviews Associate Prof. Robert Fitridge, Head of Vascular Surgery, Queen Elizabeth Hospital Adelaide, South Australia.
11july09
- Canadian Marfan Association - new look + forum
5julyt09
- Transient Ischaemic Attack or TIA (= early warning of stroke)
14june09
- The Long and Short of it - Marfan Syndrome the Independant Ireland.
6june09
- research projects Children Hospital Westmead lots of them about sport injuries and also about sudden death.
*
NSW Gov.Health, including a video where a doctor advises people on the particular flu.
&
BBC and Swine Flu.
28may09
- Thoracic Aortic Surgery with info about the different kind of operations for aorta repair (C.D.Medical Centre)
&
- re Marfan syndrome
(clear information)
* the NMF yearly conference was held there one time.
Also see links on page Heart Matters, section
- Health Issues
- personal report on retina detachment
&
- March of Dimes and Marfan syndrome
15may09
- Turner Syndrome and aorta dissection
9may09
- Marfan Syndrome: A Primer for Clinicians and Scientists
21april09
- My Space and Marfan awareness
16april09
- Health on ABC tv - Sophie Scott
12april09
- Stanford Hospital/Clinics and Marfan syndrome
- Molecular and genetic basis of heart disease at the University of Sydney/Current Research Projects.
- gogirl productions, that produced Jabe Babe.
- Research Grants Bulletin(Australian, 13 February 2009)
- also a grant for the National Marfan Foundation (USA)
8march09
If you have CPOD, Emphysema or Bronchitis, you might like to have a look at the Woolcock Institute, Sydney, or, have a look at
- this first pdf.file (Adobe Reader is needed)
26jan09
- Methodist Health Connections
6jan09
- Walking for Pleasure in NSW.
Raynaud's Syndrome
2 0 0 9
And a clean slate for . . . .