Report from the Netherlands
Before I answer your questions, I have to explain the Dutch situation for people with HSP.
In the Netherlands we have a neuromuscular disorder association that is called Spierziekten Nederland (SN). It covers the rare neuromuscular disorders, including the HSP.
The membership is for everybody with a neuromuscular disease, their partners, children and family.
There is also a special membership for people who are interested, and social workers.
The goals are a better quality of care, more effective scientific research, good advice and information for patients , doctors and other professionals alike.
The association is divided in 10 regions and 14 diagnostic workgroups.
HSP is part of the diagnostic working group for ALS, HSP, PLS and PSMA.
HSP has it's own medical advisor connected to the University/Academic Hospital of Nijmegen.
There is a 'Muscle Academy' which organises meetings in the whole country with different subjects in different places.
Everybody with a neuromuscular disease can go there. There are also 2 online forums for HSP.
SN has a magazine issued 4 times a year and the diagnose workgroup 2x a year.
Once a year there is a main congress for all muscular disorders, and a parallel congress for medical and paramedical professionals.
The people with HSP can meet other people with HSP and there are lectures by an neurologist, geneticus and physiotherapist to get information about HSP and an update of the actual academic medical development, the Scientific Board and rehabilitation matters.
There is a wide professional information available and on display, and assistive devices of all kinds are being demonstrated by representatives and therapists of all sorts (e.g. including orthotics , legal advice) , and the main sponsor "Prinses Beatrix Spierfonds" representatives show and explain their supported research developments and progress.
Herewith the answers to your questions about the Dutch situation for HSP.
Hermien Remmelink, Bauke Sijtsma
Reports from our national associations
- What is the name of your association?
Spierziekten Nederland (Neuromuscular Disorders, the Netherlands)
- When was it established?
The very first start was in 1967.
- How many members were you at the start?
Not known for 1967. Also not known when HSP came in and with how many members
- How many members are you now?
About 240 for HSP.
- How many of your members are children?
We do not know precisely by now.
- Which type(s) of HSP is/are the most common in your country?
SPG 4 (most), SPG3A , SPG 7 , SPG 8 , SPG11 , SPG 17 , SPG 31 , SPG 53.
There are 53 genes known now that have to do with HSP.
- Is your association regional or national?
National, with 10 regional groups and 14 working groups for one or more diagnoses. So, the group you are dealing with, works for the entire country.
- How do you get money to run your association?
Membership fees, donations and gifts. A major funding comes from Prinses Beatrix Spierfonds (also for other rare neuromuscular disorders).
- How many member meetings do you have per year?
One big congress a year, with presentation sessions and workshops for many of the diseases. Also, we arrange are one or two special sessions a year where people with HSP can meet.
- What are the themes for these meetings?
The annual congress focuses on progress of medical research and treatment. Additional subjects - often in the workshops - are:
practical information about the association for new members, advice how to live with the disease (regional meetings) , job subjects , how to organize assistance , housing- adaptations , assistive devices , financial and legal subjects , tiredness and how to enjoy life.
New are internet courses introduced by medical specialists and with videos (see our website www.spierziekten.nl).
- How many are there in your BoD?
SN has a BoD and office personel for the entire organisation. Our special working group for ALS, HSP, PLS, PSMA counts six members.
12. Is it difficult to find people to your BoD? Why/why not?
Yes. People are not very eager to volunteer.
13. What is your position?
Bauke Sijtsma is chairman of the diagnostic working group. Hermien Remmelink looks after HSP. Fred Kilwinger looks after the progress of medical research.
14. What kind of work do you do?
Bauke has retired. Hermien has a part time job.
- How many hours do you spend on your association per week? (on average)
16. Show your website and tell about it.
Our new website is www.spierziekten.nl
People can find information about their muscle disease. How to get brochures with information for themselves or for the family doctor etc.
There is also information for parents, rehabilitation doctors, occupational therapist, nurses, physiotherapists, family doctors, dieticians.
There are special themes: pain, food, assistive devices, heredity/genetics, how to become a member of the association, how to give donations.
Law and Justice: living, mobility, job, car, patients right, financial help, education
17. Estimates number of people with HSP.
For The Netherlands there are no precise numbers available. Our medical expert for HSP says there may be 400-500 people with HSP in Holland, and maybe more.