Our eldest son was under many different hospitals since his birth in 1968.  Feeling that there had to be a common reason for the various problems he faced I took shorthand notes at each consultation and typed them into a large Manual.  How could there possible be so many different opinions?

In 1981 we first heard the words “Marfan syndrome" and set out to learn all we could.  We were concerned to find that little seemed to be known and understood at that time and vowed "to make a difference" - thus the idea of the Marfan Association UK was first conceived.

In 1983 our son was finally diagnosed with Marfan syndrome and we are grateful to our GP and other medical specialists who were involved in finally putting a name to all the issues.

In our quest to learn more about the condition “the Rust family” flew to America to meet Priscilla who was involved with the National Marfan Foundation,USA.  We shall all be eternally grateful to her for providing us with Marfan literature and with even more fervour for the challenge as we returned to the UK. 

We continued to build a library of Marfan literature while spending a huge amount of time and effort bringing awareness to the medical profession, persuading the media to promote Marfan syndrome and supporting families who were going through the same experiences as ourselves.

In 1984 we worked extremely hard to firmly establish the Marfan Association UK.

and Now......

• We have a Marfan Support Network across the UK
• A very helpful Medical and Scientific Advisory Team
• A twice yearly magazine called  Marfan "In Touch"
• A National Annual Marfan Information Day
• Regional Meetings
• Marfan Training Seminars
• A Young Peoples Group ...... AND A LOT MORE!!
  

Diane Rust

Chairman/Support Co-ordinator and Trustee.