Reports from the national associations

Question

France

Denmark

Spain

Italy

Norway

Switzerland

Name of your association?

A.SL (Association Strumpell-Lorrain) -HSP France

Foreningen for Ataksi / HSP

AEPEF Asociación Española  de Paraparesia Espástica Familiar

A.I.Vi.P.S.

Associazione Italiana Vivere la Paraparesi Spastica Onlus-

NASPA - Norsk forening for Arvelig Spastisk Paraparese og Ataksi

HSP-Selbsthilfe-

gruppe

When was it established?

1992

 

2004

2002

2009

2004

2008

Members at start?

20

 

18

15

10 families with SPG11

60

10-15

Members now?

470 members representing 350 families.

180

About 50% are HSP members and their relatives.

283

25% relatives

120 families

249

About 50% are HSP members and their relatives.

App. 40

How many of your members are children?

We don't know

 

5

10

5

5-10

Not official

members

Most common type/s of HSP in your country

Dominant Autosomal transmission (SPG4, 3A) about 70% of diagnosed patients. Unknown genes for about 50% patients

SPG4, SPG3A, SPG7

SPG4, SPG3A, SPG7, SPG31

SPG4, SPG 11

SPG4, SPG7, SPG11

SPG4

Regional or national?

National but organized as 7 regions

National

National with several regions

National

National

Regional

(German part of

Switzerland)

How do you get money to run your association?

Half by annual fees, the fifth by government help, remaining by private donations.

 

Most pay only one annual fee for all patients of a family : 35?

Membership fees, national support and private funding.

 

 

Annual fee per member is 200 DKK  = ?  27

(2014 - ? 30)    

1/4 from annual fees, 1/3 from government help and 1/3 from private donations

 

30?

Annual fees, private donations, 5x1000 tax

 

 

 

Annual fee per member is  30?

From an association for disabled people - NHF; membership fee, bingo. Some support from the state (likemann)

 

35?

 

 

 

 

 

 

 

25?

Member meetings per year?

1 at the national level: 2 days including GA and information day.

 

3 at the region level.

2

GA in the spring

 

A thematic meeting in the fall.

2

GA

 

One week at  CREER for exchange of information among doctors, patients, genetics etc.

1

Every 2 years

 

Congress/GA

4-5

GA in the spring

3-4

1 is GA

1 if for fun and

relaxation

1-2 are thematic

meetings

Themes for the meetings?

National: Scientific, medical and quality of life topics .

 

Regional: exchanges and friendly meals

 

Various speakers to speak about e.g. quality of life, social welfare etc.

 

Every 3rd year: news from the researchers

Information of general interest, clinic research, medicines etc.

Information of general interest, sport therapy, acupuncture.

News from the researchers. Socially - talk and share experiences. Various speakers who talk about e.g. taxes, aid and  physiotherapy.

Various speakers

talk about quality of

life, sport, therapy,

medicines etc.

Your BoD?

BoD: 5 people

 

5 meetings/year.

 

Administrative Councils (10 people including the executive Directors), and Regional and Districts delegates as well as "contact" members;Member of the EURO-HSP BoD

BoD: 5 people +

2 substitutes

 

 

 

 

5-6 meetings/year

 

+ committee meetings

BoD: 4 people

1 paid staff

 

 

 

 

4

meetings/year

with the delegates

BoD: 4 people

+

2 counselors, 1 regional in Sardinia.

 

1

meeting/year

 

Daily contact per mail

BoD: 5 people

 

 

 

 

 

8

meetings/year

BoD: 4 people

(not hierarchic)

Is it difficult to find people to your BoD? Why/why not?

Yes a lot!

 

People do not want to be bored  by association management: free activity and time consuming,

 

They are afraid to be in charge and not to be enable doing the job

 

They are fed up of handicap and don't want speaking any more about it!

Yes!

 

People do not want to get involved and spend their spare time in the association.

 

Some are fed up with their handicap.

Yes.

 

People feel disappointed not seeing quicker results

Yes!!

Yes.

 

People have enough with themselves and their daily life as disabled.

Yes

Your position

Vice-President

 

Scientific Advisor, Paris and district representative,  official representative on behalf of President (Philippe Hanriat) at Scientific Council*, and Medical and ParaMedical council*

Vice-president

 

Official representative for people with HSP.

 

Contact person for HSP members.

Not on the BoD

Vice- President

Vice-President

 

Contact person of the association

 

Your work

Representation, secretarial activity (meeting reports), phone contact, meeting organization.

Member of the steering committee, the fundraising committee, the travels committee, the thematic meeting committee, the research committee

 

In charge of the annual Walk´n Roll event.

 

Meeting organization, web site, contact with doctors.

Write various applications, invite various speakers to the meetings

 

 

 

Hours per week? (on average)

15 hours

 

15 hours

5-6 hours

15-20 hours

2 hours

 

Your website

Go to  "asso.orpha.net/ASL/index htm"

 

Today our site is organized according to 5 topics:

  1. Welcome
  2. The disease
  3. The association
  4. Practical information
  5. Please contact us.

www.sca-hsp.dk

 

 

www.aepef.org

www.vipsonlus.it

 

www.naspa.no

 

The website tells a little about

  1. The association Naspa 
  2. The diagnoses HSP and Ataxia.
  3. Meetings
  4. Representatives.
  5. The by-laws
  6. A forum
  7. Training-exercises
  8. How to become a member

www.hsp-selbsthilfegruppe.ch

 

 

 

Estimated number of people with HSP

 

400

 

1000-1500

500

160

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Events