First steps
Involve a few interested people—headache sufferers, their carers and professionals
Find out if your country already has similar organizations (ask Ministry of Health, WHA, WHO, Church)
Establish a contact name, address and telephone number
Organise a public meeting
Advertise the public meeting in newspapers, local radio, hospitals, clinics, pharmacies and libraries
Agree at the public meeting to setup an organization
Initial decisions
Form a small committee
Appoint a chairperson and treasurer with term of office
Nominate medical/scientific advisors
Hold regular meetings
Define initial aims
Divide up tasks
Establish priorities you need money for
Identifying aims and services
Your organisation may want to:
educate and raise awareness about headache disorders
help headache sufferers find quality care
provide community support for headache sufferers and their families
encourage the government to recognise the burden of headache disorders on the community and allocate resources to care, treatment and research
work with other groups to help headache sufferers around the world
To meet the aims established, you may wish to:
establish self-help groups
publish a newsletter
provide information
raise public policy issues with your government
set up membership to provide on-going support, communication (and raise money!)
provide support services such as helplines
offer training
raise awareness with public, media and government during Awareness Day/Week/Month activities
raise money to pursue the above aims and activities
Projects and activities
Find administrative/secretarial help (may need to be volunteer to start)
Advertise and appoint an Executive Director, if resources are available
Find space to maintain the organisation’s records — an office or even a room or table will do to start
write a simple constitution (examples are available from WHA)
Useful characteristics of volunteers
Capacity to get along with other people
Experience and knowledge of the burden of headache disorders
Capacity to listen
Time to give
Business or fund-raising experience
Professional skills — e.g. doctor, social worker, nurse, psychologist, lawyer
Absence of major personal problems
People with energy, ideas and motivation
Willingness to learn and work
Recruiting volunteers
Ensure adequate preparation in the organisation before recruiting — by providing training, support supervision and practical resources such as phone, desk, chair and instruction manual!
Decide on role of volunteers in the organisation — caring, administrative, practical etc. and their relationship with paid staff
Agree on the skills needed by the volunteers — financial, PR (public relations), administrative, supportive, etc.
Think of where to find volunteers — other organisations in the community, colleges, universities, advertising in clinics, etc.
Consider how to find suitable volunteers — advertising, word of mouth, etc.
Decide what the organisation can offer volunteers — experience, satisfaction of meeting and helping people, training, etc.
Try to provide what volunteers want from the organisation — job description and satisfaction, information, guidance, support and recognition.
Likely reasons for needing money
Telephone
Answering machine
Fax
Postage
Rent of room/office
Computer equipment and email
Stationery
Photocopying
Travel expenses
Newsletter
Publications
Part-time or full-time person in office
Executive Director plus administrative assistance (ideally)
Ways of raising money
Subscription fees from members
Donations from members
National and local government grants
Grants from national religious organisations
Sponsorship from drug companies (but without conditions attached — WHA has policy guidelines to help)
Legacies
Sponsorships from business and industry
Fund-raising events
Direct mail
Donations in kind (services and office or other needed products instead of cash)
How to provide information
Answer enquiries quickly, efficiently and sensitively by telephone, letter and email
Have professional advice available
Prepare fact sheets
Develop publications for key stakeholders — public, people with headache, employers, government, funders
Circulate newsletter
Record videos
Offer helpline
Host web page or site
Ideas for a newsletter
Publish regularly — e.g. every 3 months
2-4 pages each issue
Include questions and answers regarding headache disorders
Call for letters
Highlight a personal account
Review an aspect of good lifestyle management
Use research article (WHA’s website has wealth of material to choose from)
Interesting local and national events in your country
Information and advice on benefits and services
Information on national (or other) headache organisations and meetings
Funding and fund-raising information
Ensure an attractive appearance, perhaps photos
Include useful names and addresses
Review latest headache books
Avoid advertisements if finances allow (or contact WHA for policy guidelines on advertising and sponsorship)
Basic fact sheets and publications
Headache disorders backgrounder
The organisation and its aims
How to start a self-help group
Up-to-date research (see WHA’s website at www.w-h-a.org for latest information) written for people with headache disorders and those who care for them
Legal issues
Training materials — governmental affairs, clear language, media relations, etc.
Newsletter
Support services
Information and advice service — e.g. telephone helpline
Self-help groups
Government lobbying for treatment and research options, employment equity and disability protection
Instructional and support services to schools, clinics, and other groups
Work with headache clinics and physicians to increase value of patient visits through community support and follow-up
It is often difficult for small organisations with limited resources (both human and financial) to provide services. Look for opportunities:
to collaborate with statutory, voluntary and private organisations
to systematically provide training
to nurture and support your volunteers.
Ways of raising public awareness
Attractive, informative and understandable publications
Efficient information service
Membership campaigns
Newsletter circulation (try electronic newsletters as well as print)
People with headache and professionals giving public talks with slides/overheads
Open dialogue with politicians and forge links with governing and opposition members
Radio and television broadcasts
Staff telephone lines after media opportunities
Distribute posters and leaflets
Develop promotion materials: display stands, videos, T-shirts
Support research
Host awareness events –e.g. World Headache Awareness Month
Give the name and contact information for organization whenever possible.
Public policy issues
Establish high political priority for people with headache disorders
Increase resources (for treatment, government sponsored research, disability allowances) for headache disorders
Gain recognition by obtaining membership in World Headache Alliance
Create and improve services for people with headache disorders
Create and improve benefits for people with headache disorders
Encourage appropriate standards for care
Provide training and information in lifestyle management and support
Improve assessment and diagnosis
Research
Supporting research raises awareness
Both epidemiological and treatment research are important
Governments and non-pharmaceutical sources need to be encouraged to support research
Members need regular updated information
You can help by:
providing information to people with headache disorders
subsidising existing research activity
involving research scientists as advisors
ensuring focus of society remains on reducing the burden of headache disorders
Lifting The Burden
Lifting The Burden, the global campaign to reduce the burden of headache worldwide, seeks to understand the scale and scope of the burden attributable to headache in all parts of the world.
Lifting The Burden plans to put into place projects to alleviate the burden region by region.
Lifting The Burden is a joint enterprise of professional and lay headache organisations (World Headache Alliance, International Headache Society and European Headache Federation) and the World Health Organization.
In time, Lifting The Burden expects to reach and benefit those adversely affected by headache wherever they live in the world.
How WHA can help you
World Headache Alliance (WHA) is a global cooperative of non-medical headache organisations from around the world whose mission is to reduce the burden of headache disorders.
One of WHA’s key roles is to support member organisations in their activities and encourage the formation of new associations where none currently exist.
WHA disseminates information, supports international training opportunities and networking meetings, encourages research and stimulates public and political awareness at national and international levels.
For more information email: info@w-h-a.org
WHA materials
Booklets
Starting a self-help group
Government Support Program
Best Practices in Raising Awareness of Headache Disorders
Factsheets
Headache Disorders
World Headache Awareness Month Proclamation
Lifting The Burden, the global campaign to reduce the burden of headache worldwide
Website
Understanding Headache — core information on headache disorders
Research — the latest research written for non-medical audience
Community — information and events from around the world
WHA — activities and information about WHA and member organisations
You can contact WHA for any of the above materials or for further guidance in developing a headache organisation. WHA will be pleased to connect you with member headache organisations in other countries to assist you as well.
