The unceasing and vigorous efforts of medical staff at NHP and the Club itself have brought about several encouraging achievements:

· Improved knowledge about CAH amongst patients and their parents. They understand that CAH is a life long disease and that medicine is an essential part of their life, without which they would end up in misery, especially the female patients.

· Improved adherence to medication schedules and attendance for regular checkups at NHP.

· We have demonstrated our ability to use the money donated by Mr and Mrs Gronn effectively to pay for medical examinations, subsidized medications, lunch, travel assistance and informative literature.

A problem we face is that many families are very poor (monthly income is at farmer level of $25 to $50 USD), but on average, each CAH patient whose dosage is 2 tablets a day has to spend $15 a month on 3 packets of 25 tablets/10mg. In the countries where hydrocortisone is readily available, namely Australia or the USA, CAH patients only spend one-sixth as much money!

Another problem is that the number of patients being managed through the Endocrine Clinic at NHP has increased from 50 in 1998 to nearly 200 in 2003. This situation demands greater finance and human resource to make it workable. The Club’s Chairmen have little experience in fundraising activity. CAH is a difficult condition to fund-raise for, because it involves sexual ambiguity, and is therefore an extremely sensitive and embarrassing condition in Vietnamese culture. This makes CAH patients reluctant to participate in annual meetings and Club activities, particularly when they are grown up.

More than 80 per cent of patients come from rural areas, some of which are remote and mountainous, where the efficiency of diagnosis and the public knowledge of CAH is limited, resulting in late diagnosis and the masculinization (of girls) that is too strong to be reversed by operation and medicine. Second, the geographic distance causes great difficulties to the members to keep in touch with each other and with the Chairmen.

and their families.

Taking all the aforementioned into consideration,  we have set up a new action program to increase the efficiency and effectiveness of the club’s activities and management. Since CAH is sensitive and embarrassing to many patients and their families, the strategic solution is to offer the members more benefits and conveniences so that they can realize the necessity of participation and involvement.

A.   Improvement in quality of annual meeting:

1.     Accommodation.
The vast majority of CAH patients live far from Hanoi so the Endocrine Department of NHP has had to provide accommodation for them the night before the meeting. However, with the aim to diversifying the activities, the chairmen would take the responsibility for holding a warm party at that night to motivate them and conduct a friendly and open discussion about life, medical condition, psychology, sufferings of CAH patients in order that they can share experience and receive advices from doctors.

2.     Diversify the activities in the formal meeting.
Increase the period of feedbacks between doctors and patients, rather than just have one-way lectures. The focus is placed on the knowledge of parents and patients about CAH and consultation about psychological and behavioural abnormalities. In other words, members would play a more active role and participate more fully. As well, we can hold some contest or games between families to check their understanding of CAH and then we will have awards for those who are best.

Awards would be presented to CAH patients who achieve good academic results, develop successful and appreciated social activities or who make a positive contribution to the CAH club.

If we had $1,000 USD per year for the annual meeting, we would develop a social program so that parents and patients could get together and relax. We would hold trips or picnics around Hanoi. This kind of activity would have great positive influence on strengthening the relationship between the Club and its members.

If we would receive donated medicines, we would make an equal distribution at the annual meeting for each patient.

Overall, if CAH patients can enjoy the benefits of free or discounted medicines, the outdoor activities and active participation, we, the Chairmen, strongly believe that our club would be well supported and could develop.