HEA and Its Outreach in Europe

By John L. Sunderland, HEA Board Member

John Sunderland, as HEA's UK Board Member, has been working on developing relationships with other DSD support organizations and concerned individuals in Europe.

As part of an ongoing plan, I managed to meet up with Ino ter Haar in Amsterdam a couple of months ago and told him that we were very grateful for his continuing contribution, sourcing and posting medical papers related to disorders of sex development (DSDs) on the HEA Message Board. He is a psychologist unable to find work in his field at present. However, he does have access to websites at a library, and this is how we are able to read these papers and reports. Ino said that the library’s budget has been cut back recently and subscriptions to some publishing sites are not funded anymore; this may curtail his research slightly.

Ino and the man who set up the Dutch hypospadias site have been asked if they would like to meet Chris Arnold (HEA's President) and me at the end of June or early July, when Chris is in Europe. A meeting may have occurred by the time this newsletter is published.

Belgium has a fairly new hypospadias support site. It does not seem to be very active, although I have made contact with the group.

Massimo di Grazia and Oliviana Gelasio visited the United Kingdom from Italy in May and stayed with us for a few days. We discussed various possibilities for a questionnaire, whether it could be publicized by HEA, and if so, whether we could use the results. This is an ongoing project being considered by HEA’s board of directors.

The DSD group in Italy is made up of children and adults with various forms of DSDs, including exstrophy, epispadias, and hypospadias. Italian law restricts certain treatments, and things that we might see as the norm are not possible there. I do not think this is the place to air these “differences,” but I did find that Massimo handles things there with love and a very professional approach, driving great distances to visit families and offer personal support.

According to Massimo, there is a fairly active hypospadias support group in Spain. I will make contact with that group shortly.

I found an umbrella organization working in and for Europe that covers rare diseases, and while I have visited its website, I have yet to see whether it is covering DSDs. The Italian group has recently become a member of the organization, and Massimo is hoping to make a presentation to the organization in the near future.