Patient organisation interview: Gunhil Nørhave, Alpha-1 Denmark
In this interview, Gunhil Nørhave, Chair of Alpha-1 Denmark, tells us about the organisation’s work, and how they are collaborating with similar organisations in different countries to have a larger impact.
Can you tell us about Alpha-1 Denmark and your area of work?
We have just over 400 members, and have been around for about 20 years. As a small community that represents a rare disease, our job is to be ready to answer questions from our members, and to organise information meetings with presentations from healthcare professionals and other important stakeholders.
Once a year, we hold a weekend to bring people with Alpha-1 antitrypsin deficiency (Alpha-1) together – one for our adult group and one for children with the condition and their parents.
What are the man challenges relating to Alpha-1 in Denmark?
Raising awareness of Alpha-1 is a huge task; knowledge among the medical community is inadequate, and 1 out of 4 private doctors in Denmark do not know about the condition or think of it as a possible diagnosis. This is a common issue in many countries, so people with Alpha-1 are expected to be very well-informed.
Augmentation therapy is another important topic. Many European countries already have access to this treatment, however it is not yet available in Denmark, due to a lack of evidence. However, as evidence of the positive effects of this therapy has now been published in The Lancet, we believe the treatment should be offered.
What are you working on at the moment?
We are working on a survey for our patient groups, together with organisations in Norway and Sweden, to help put together a picture of the life with a progressive condition. The purpose is to create awareness and get Alpha-1 centres to ensure the best possible treatment for people with the condition from specialists. This includes having access to the necessary specialists the same day they go to get their annual check, and having contact with lung specialists, hepatology specialists and nutritionists.
Could you tell us more about your collaboration with other countries and how this is of benefit?
We have meetings with the organisations in Norway and Sweden, since we have the same condition and are very small units in each country. We believe that, by working together as a Nordic community, we strengthen our impact.
In 2013 at the Alpha-1 meeting in Barcelona, Spain, we were part of the decision to create Alpha-1 Global, a worldwide organisation for the Alpha-1 community. I represent the Nordic countries as a member of the Alpha-1 Global steering committee. We work to gather people with Alpha-1 from around the world, and help them organise to themselves in their individual countries. We have developed toolkits in order to support them.
I also believe that Alpha-1 Global will increase and support us all. At our meeting in Oslo in November 2015, we Karen North from the Alpha-1 UK Support Group and Frank Willersinn from Alpha-1 Plus Belgium both joined us and gave presentations. This kind of thing did not happen 2 years ago, and I see this as a new benefit for us.
Do you have plans to hold any events in 2016?
Right now I am working on a symposium, which we will hold on 12 April, 2016. We will have presentations from doctors and professors from England and Germany, Rare Disease Denmark, and patients from Denmark, Norway and Sweden.