HYPOHH was set up in 1994 by Mark Saunders, a 27-year old man with Kallmann's syndrome living in London, England who wanted to contact fellow sufferers in order to share experiences and help him and others come to terms with the condition. It was the first such support group anywhere in the world.

It became clear soon after HYPOHH was founded that in order to contact others affected by Kallmann's syndrome, HYPOHH had to get the medical profession interested in what the fledgling group was hoping to achieve. A London-based team of endocrinologists specialising in the research of Kallmann's syndrome and working at one of the UK's leading medical schools heard about HYPOHH's existence and contacted the group. After some discussion it was decided to work jointly on a patient- targeted information booklet on Kallmann's syndrome, the first such publication ever attempted. Two years and many months of research later the book was ready and 3,000 copies printed. An on-line version of Understanding Kallmann's Syndrome is available on HYPOHH.net. Five years later, HYPOHH is still in very close contact with the Department of Endocrinology at the Royal Free Hospital, Hampstead Heath in London.

Now that HYPOHH had the support and interest from the medical profession, the next step was to obtain funding. By mid 1995 HYPOHH only had 2 members, both of them Kallmann's syndrome sufferers, and so raising money through membership fees was not a practical option. The only other option was to contact pharmaceutical companies who manufactured drugs and medicines to treat hypogonadotrophic hypogonadism. By the end of 1995 Ferring Pharmaceuticals, a Germany based pharmaceutical company, offered HYPOHH its financial support.

As HYPOHH lacked a proper structure it was decided to join forces with the Pituitary Foundation (PitPat), a registered charity catering for the needs of pituitary gland patients. To this day HYPOHH remains affiliated to PitPat, which provides it with invaluable support.

HYPOHH Becomes Established

The first 18 months after the foundation of HYPOHH were relatively slow. Membership was growing slowly but steadily as word got around that at last there was a support group of Kallmann's syndrome sufferers to turn to. There was also the obstacle to overcome of convincing others in the medical profession and pharmaceutical industry that HYPOHH wasn't just another support group. It had a genuine interest in working together with them to raise awareness of Kallmann's syndrome and other forms of hypogonadotrophic hypogonadism.

Understanding Kallmann's Syndrome was published in April 1997 and launched at the British Endocrine Society meeting in Harrogate, Yorkshire. A few weeks later, a small advertisement was placed in the Endocrine News (a US publication) and well over 100 replies from endocrinologists, other doctors and pharmaceutical companies were received from all over the world, asking for one or more copies of the book.

By now HYPOHH membership was increasing at a faster rate than before and soon the group had 50 members, the majority Kallmann's syndrome sufferers. In July 1997 HYPOHH, together with the Royal Free Hospital and University College Hospital held its first open day. A number of guest speakers were invited to talk about the characteristics and symptoms of, and different forms of treatment for Kallmann's syndrome. The event was a success, with over 30 people attending from all over the UK.

HYPOHH Attracts Interest From Overseas

It was towards the end of 1997 that HYPOHH first discovered the Kallmann's syndrome e-mailing list set up by an American sufferer, Dan Brown. Subscribers from all over the world had found an ideal, almost "live" forum to share experiences, address concerns relating to looking younger than their age, their lack of sense of smell and types of treatment on offer. The internet and email offered fellow sufferers something which conventional forms of communication could often not deliver: a huge, vast information resource accessible to anybody with an internet connection living anywhere in the world. Thanks to Dan's emailing list HYPOHH membership continued to grow.

In April 1998 the first issue of the quarterly HYPOHH newsletter "Info" was published featuring an article on how a lack of pubertal development can affect self-esteem and a report of the first HYPOHH open day the previous July. The newsletter was now HYPOHH's main source of communication.

In July 1998 the second HYPOHH Open Day was held at the Royal Free Hospital and this event too was well-attended.

Even though Info kept members informed of the group's activities the previous quarter, this was only sent out to those who were already members or those who were thinking about becoming members. Potentially, hundreds if not thousands of other sufferers around the world had not heard of HYPOHH before and were just as keen for answers to their questions on Kallmann's syndrome and the other forms of hypogonadotrophic hypogonadism. Clearly another source of communication was required. The first seeds of HYPOHH.net were sown.

Work on HYPOHH.net began in earnest in August 1998. The actual contents of the site had to be defined at an early stage in its development and help enlisted from the relevant specialists and volunteers. The end result is what you see now.

HYPOHH Becomes A Self-Financing Organisation

In the months following the second HYPOHH Open Day it became apparent that other ways of funding HYPOHH needed to be identified and pursued as quickly as possible if the group's activities were to be sustained.

A five point plan to secure the future of HYPOHH was devised.

The first step was to ensure that HYPOHH became a self-financing organisation and a proper structure for the group was established. The positions of chairman, secretary and treasurer were created and inaugural committee members appointed. HYPOHH rules and regulation were also written and approved.

The second task was to work out how much it actually cost to run HYPOHH. It was estimated that in 1999 the running cost would lie between £1,200 and £1,800 (US$ 2,000 - US$ 3,000).

The third step of the plan was to open a dedicated HYPOHH bank account and on September 28th, 1998 this became a reality.

Fourthly, new financial sponsors needed to be identified and contacted. HYPOHH wrote to a number of pharmaceutical companies explaining the group's purpose and activities and encouraging responses were received from around half of them. We hope to convert these responses into real cash during the course of 1999.

The fifth and final stage of our plan was to introduce a small annual membership fee. Up until that point, HYPOHH members were not required to pay a membership fee as the costs had always been covered by our financial sponsors. However, now that HYPOHH's financial future appeared less secure, alternative methods of funding, including the introduction of membership fees, had to be investigated. In October 1998, all 87 HYPOHH members were asked if they would be willing to pay a small annual fee to help pay for HYPOHH's activities and by the end of the year, almost half of them replied 'yes', many of them offering to give more than the recommended donation. By July 1999, the relaunched HYPOHH had a fully paid up membership of 51.

The Future

1999 is going to be a very challenging year for HYPOHH. Although our financial future looks more secure when compared to only a few months ago, there is still a long way to go. Financial sponsors need to be found and a larger membership is in everybody's interest, but the future for HYPOHH is beginning to look bright again.

HYPOHH.net is now online, a major achievement. In the coming months, the site will be expanded to include other forms of hypogonadotrophic hypogonadism, not just Kallmann's syndrome. New sections may be introduced and members and non-members alike will be kept informed of what HYPOHH has been up to via the online version of our newsletter, Info. It all depends on you - tell us what you would like to see on HYPOHH.net.