Publications_list_2008.doc

Publications 2008
Reg Charity No: 802727 ( Estab 1984) Web: www.marfan-association.org.uk Email: marfan@tinyonline.co.uk
1. Marfan Emergency Card - £2 Free to members } Annual Subscription is £15 per year
1a. Marfan “In Touch” Magazine - £3 Free to members } due 1st Feb. annually (£22 overseas)
Basic Pack - £10 (incl postage & packing) 2. Fact Sheet on Marfan Syndrome 2006
7.Emergency Diag & Treat of Aortic Dissection – 1998
3. A4 Large Marfan Fact Book on MFS - 2002
8. Booklet - Before & After Birth - 1998
4. Pamphlet for the Ophthalmic Profession - 1997
9. Booklet for Teenagers - 2005
5. Pamphlet for the Chiropody Profession - 2003
10. Booklet–A Very Special Mouse -for children 1990
6. Pamphlet for the Dental Profession - 2002
11. Booklet for Teachers - 1993
6a.Pamphlet – Musculoskeletal Problems - 2002
12. Booklet – Fun with Fundraising
6b.Pamphlet- Psychosocial Aspects - 2002
12a Booklet – Gospel Poems - Relaxation with Jesus
6c.Pamphlet for ENT Surgeons - 2002
12b Booklet - Gospel Poems - A Moment with Jesus
A4 Clinical Guide is included for doctors – 2002
Set of Pamphlets - £1.00
Research Results – European Marfan Study 2005

“Support for Today with Tomorrow in Mind”
13. MARFAN VIDEO 2000 - £15 per copy – 2hrs. 35 mins.
Scoliosis Management; Eye Problems; Aortic Surgery; Research Update; the Teen`Years; the Marfan Association UK 13a. MARFAN VIDEO 2003 - £15 per copy – 2hrs. 47 mins.
International Research Update; Ear, Nose and Throat; Orthotics; European Marfan Study Findings 13b. MARFAN INFO TAPE FOR THE VISUALLY IMPAIRED - £4 donation
13c. WAYNE’S RECIPE BOOK – “A Zest for Life” - £4 per copy
Information Leaflets - Min. of 50p per item helps us to re-print - Thank you
14. Care of Symptomatic Marfan Joints - 2002
38. Impact on the Whole Family - 2004
15. Role of Nutrition in Irritable Bowel Synd - 2001
39. Management of Eye Problems – 2004
16. Pain Management - 2001
40. Inherited Ophthalmic Disorders - 2006
17. International Research Update - 2002
41. Orthopaedic Aspects of MFS - 2005
18. Genetic Testing in Marfan Syndrome - 2002
42. The Alexander Technique - 2004
19. The Use of Hormone Treatment - 1997
43. Fact Sheet - Large Print
20. Dental Health for Heart Patients (B.H.F)
44. Infantile & Neonatal Marfan Syndrome 1995
21. Living With Marfan Syndrome – 2004
45. Marfan Research Update - 2004
22. Pregnancy in Marfan Patients - 1996
46. Obstructive Sleep Hypopnea - 1995
23. Genetics & Insurance Brief Survey Result 1997
47. New Hope for Marfan Lit Review - 2006
24. Addressing Special Needs of Siblings - 1997
48. Health Supervision - Birth to 21 yrs – 1999
25. Simon’s Poem – teens view, living with MFS 1985
49. Genetics and Insurance - 2001
26. Advice for the Older Marfan Patient
50. Practical Paediatrics in MFS 2002
27. Revised Diagnostic Criteria (Ghent) - 1996
51. General Medical Research Report 2002
28. Marfan syndrome and the Eye - 2004
52. ENT, Bone & Joint, & Dental Aspects 2002
29. Research Developments - 2005
53. Info Day Workshop – Growing Older 2002
30. Advice Regarding Feet & Footwear - 1996
54. Info Day Workshop– Marfan and the Mind 2002
31. Physiotherapy for Joint Hypermobility - 2004
55. Info Day Workshop Growing with MFS 2002
32. Article: Midwives’ Journal & Reply-1996
56. Joint Hypermobility – patient survey 2003
33. Sports Guidelines – 1993
57. Marfan and Pilates – 2003
34. FBN1 Mutation Screening - 2005
58. Orthotic Management of the Ankle/Foot 2003
35. Incidence of Osteopenia in MFS - 1995
59. Losartan – “A Whole Lot of Optimism” - 2005
36. Joint & Skin Manifestations Prevalent- 1995
60. Ageing and Marfan Syndrome – 2002
37. MFS & Overlapping Conditions - 2002
61. Joint Hypermobility Syndrome (pain mgmt) - 2003

Source: http://www.marfan-association.org.uk/sitebuildercontent/sitebuilderfiles/publications_list_2008.pdf