By Christian Krog Madsen (cicero)
1. What types of disorders does your organisation provide services for?
The Danish Hemophilia Society (DHS) provides services for people with bleeding disorders. This includes Haemophilia, rare factor deficiencies and von Willebrand disease, but has in recent years also expanded to include ITP - an acquired platelet disorder.
2. How many members does the organisation have?
The DHS has around 600 members including both people with bleeding disorders, relatives and people with an interest in bleeding disorders. It is estimated that out of the total population of 5.5 million people living in Denmark, about 880 are affected by a bleeding disorder. Due to the relatively small number of members and the fact the distances within the country are short, there are no local chapters.
3. How does the organisation get funding for their activities?
Approximately half of the funding of the DHS comes from government subsidies and the majority of those funds stem from the national bookmaking agency. There is a state monopoly on bookmaking (sports betting, lotto, instant scratch games, etc.) and the profits from those activities are distributed among charity organisations, including patient organisations. Further government funding comes from time-limited pools targeted at specific purposes. To receive these funds, the organisation must file an application for a specific project. For instance, Los Bleedos was originally funded by such a pool intended to explore new ways to engage volunteers in charity work.
The other half of the funding comes from selling secretariat services to an umbrella organisation for rare disorders and through grants from pharmaceutical companies. Membership fees and lotteries also contribute, though only by a small amount.
4. Does the organisation have an office and staff?
The DHS has an office in central Copenhagen with 8 permanent staff and two part-time student workers. The office also houses the umbrella organisation for rare disorders (which incidentally has the DHS as one of its member organisations), mentioned above.
5. Was the organisation established by patients or by doctors?
The DHS was founded by a father with a haemophiliac son and two doctors in 1970. Among other things, the goal was to inform people with haemophilia about the disorder and how to live with it. To begin with, the society was run entirely by volunteers, but in 1988 the activities had grown beyond what was possible with voluntary resources and a secretariat was established.
6. Does the organisation play an active role in treatment for people with bleeding disorders?
In the Danish health service, patients traditionally do not have much influence on how funds are distributed and what treatments are offered. This is decided by politicians and medical professionals. The DHS does take part in a medical committee with doctors from the two national haemophilia treatment centres, but does not have any official mandate to influence decisions about the centres. Instead, the DHS seeks to inform and influence politicians to promote improved care and treatment for people with haemophilia.
The DHS also has a role in educating general practitioners about the symptoms and treatment of bleeding disorders and in educating patients about their disorder and how to best cope with it.
7. What kind of treatment is available for people with haemophilia in your country?
Denmark has a high standard of treatment. Whenever possible, recombinant factor products are used to eliminate any risk of viral contamination. Patients undergo an annual or bi-annual checkup at one of the treatment centres. The checkup includes a joint examination.
8. Is prophylactic treatment available to patients?
Prophylactic treatment is offered to all severe patients and I think it is also available for moderate and mild patients, if they wish. All expenses are covered by the national health service.
9. Do people with haemophilia have access to a physiotherapist or similar health care professional to help with exercises to strengthen joints or muscles after an injury?
Until two years ago, haemophilia patients were entitled to free physiotherapy in their home area. Now, this service is no longer free. However, a physiotherapist is associated with the treatment centres and is available for advice on training, special footwear and similar.
10. What sorts of activities does your organisation offer for members?
The range of activities hosted by the DHS is broad. Realising that the needs of patients differs markedly depending on age, many of the activities are intended for a specific age group. For the children, the annual summer camps are a big hit. The camp usually lasts a week and is a good way for the youngest to learn from the older children. For many, the camp is the place where they learn to self-infuse. For the youth members, the social activities are the most popular, for example trips to concerts. There is also an over-50 group which meet regularly. Workshops are hosted in connection with the society's annual meeting and usullay there will also be some lectures throughout the year.
11. Does the organisation organise skill-building programmes or courses for members?
Most patients with bleeding disorders in Denmark are capable of holding a job on almost equal terms with people without those problems. Hence, the need for skill-building for members does not exist in the way it does in developing countries.
An area where skill-building programmes may become important is in the retention of volunteers. We operate in a competitive environment, where different forms of charities all compete for the same voluntary resources, and being able to offer programmes or courses may be one of the elements needed to recruit and retain new volunteers. Although volunteers are willing to offer their work and energy, many also expect to "get something back" in the form of personal development and something for their curriculum vitae.
12. Are there any activities specifically for young members (ex. aged 15-30)?
About 4-5 years ago, a group of proactive youth decided to arrange a meeting for all young members. Many of them knew each other from the summer camps but were now too old to attend them. Instead, they went to concerts or holiday resorts mostly just to have fun and catch up with friends and get to know new people. Since then, there have been 1-2 activities each year.
We are currently trying to establish a more permanent youth committee to plan and develop these activities.
13. Try to imagine your organisation in 2011. How do you think it will differ from today?
For one thing, the average age of the members will have increased. This follows from the fact that the life expectancy of people with haemophilia is now very close to the national average, due to effective treatment and the elimination of contaminated products. This is a new situation that must be addressed both within the haemophilia society and within the treatment centres.
Another area where we will see changes is in funding. More and more, we are having to compete for government funds rather than just receiving a fixed amount each year. This will require a continued effort in writing applications and proposing projects that match the purposes for which the pools of money are ear-marked.