How to Start a Thyroid Patient Association

Think Big: Start Small

From ThyroWorld, Volume 2, No. 1, Spring 1999

Before you begin your project of starting a thyroid association for patients, you should first ask why you want to do this and what it involves. How much of your time and energy are you willing to commit?

You should define your purpose and goals. Although these may vary from country to country, they generally include:

• Producing and providing accurate understandable information about common thyroid problems.
• Giving emotional support to thyroid patients and their families.
• Undertaking fundraising for thyroid research.

There may be other interests including increasing public awareness about thyroid problems and creating a list of thyroid specialists in your area. Again, the needs and priorities of your particular situation must be defined.

What You Need

• Two or three dedicated thyroid patients who want to create an association to help others.
• A thyroid physician to act as medical adviser and assure accuracy of the medical information presentation.
• Media assistance for education and publicity through television, newspapers, and radio. Many media sources are free.
• An office where materials can be stored. House room may have to do until an office can be arranged.
• A telephone and answering machine service for Help Line calls.
• A lawyer to help you create Articles of Organization, Bylaws, and a Constitution, and to guide you in obtaining liability insurance. The lawyer can also help you register as a charity and obtain tax-exempt status for contributions.
• Stationery with the name of the organization for all correspondence. The stationery should have the address of the organization and a telephone number, as well as the names of key staff persons. List the Board of Directors indicating the officers. You can also list the names of the Medical and Legal Advisers.

  Hold a Meeting

  Early in the game, it is a good idea to hold an open meeting of interested people. Gather a group through an advertisement saying, "Thyroid Association being formed by thyroid patients to encourage education and support for patients with thyroid disorders. If interested, please telephone _______." the meeting can be held at someone's home or at a local church, hospital or business, depending on the size of the group. At this initial meeting, it is good to start off by having everyone introduce themselves, state why they are there and what kind of association they would like to see. A volunteer secretary or chairperson could list the ideas on a chalkboard or easel pad and then summarize the discussion at the end. If those present agree that an organization is worth forming, they should also try to identify one or more physicians and possibly a lawyer to help them with further development. They should also appoint or elect an interim Executive or Board of Directors.

  This group should then organize a public education meeting, well advertised, announcing the speaker, topic, date, time and place. When the big day comes, keep a record (names, addresses, telephone numbers) of those attending. You may wish to call on some of them as volunteer committee members.

  TFI Support

  TFI will provide examples of brochures about common thyroid problems, samples of various newsletters and public announcements, a list of potential topics for thyroid educational meetings, samples of Bylaws and legal documents as well as a sample of a financial accounting procedure to keep track of donated funds. We will give you examples of books that have been written for thyroid patients. If you would like to copy these books or any of the brochures or newsletter articles, please obtain written permission from the organization or author and indicate in your literature that it has been "translated with permission from _____", then insert the name of the originating group. Permission to copy the book Your Thyroid: A Home Reference must be obtained from the authors and Ballantine books, but with that permission you are able to copy chapters of the book or the entire book when appropriate credit is given.

  Money in the Bank

  It's a good idea to nominate a Treasurer of the organization early and to start a bank account for the thyroid association. Gifts are not tax-deductible until you obtain a tax-exempt status, which requires a legal document.

  Searching out Specialists

  All volunteers and other personnel must understand that no one in the organization except the Medical Adviser should give medical advice. As your Medical Adviser for the names of endocrinologists or thyroid specialist physicians to whom patients may be referred. Most organizations will choose to obtain these from the local thyroid association of your city, state or country. If you want to know the physicians who practice thyroidology, this information can usually be obtained from the pharmaceutical company that manufactures and sells thyroid medication in your area. These drug companies will know the names of the thyroid specialists who prescribe thyroid medication and may be able to give them to you or your medical adviser.

  Physicians who specialize in thyroid surgery or thyroid eye disease can usually be found through local medical societies if your Medical Adviser will contact that society. Your Medical Adviser should not accept referrals from patients who call your group. The Medical Adviser should make an effort to avoid personal gain from association with your thyroid foundation. Instead s/he should find the names of other thyroid specialists to whom appropriate referrals can be made.

  If your efforts are to increase public awareness about thyroid problems, you should do fundraising early. Sometimes a pharmaceutical company which makes thyroid medication will give financial and other support, such as brochures and other written information for thyroid patients.

  Responding to Requests

  When an individual contacts your thyroid association, a prompt reply should be made, giving information relevant to the particular question, plus a general brochure or letter describing your organization's goals to help and support thyroid patients. you may wish to refer diplomatically to the cost of the response package, and that a contribution would be appreciated to enable you to continue to provide support for others. "We need your support to give ours."

  List the services you provide which may include written information, educational programs and a telephone response line, often called a Help Line. Indicate as well the additional programs that you would like to start when more volunteers and funding are available.

  At that time, you can also point out that your association is one of many similar organizations in the Thyroid Federation International and that you would appreciate funding for a represenattive from your organization to be able to attend the annual meeting of TFI.

  Good luck and best wishes from TFI for what you are undertaking to help thyroid patients. Remember that you cannot accomplish all these things at once nor build an association overnight. The Thyroid Foundation of Canada, the first thyroid patient organization in the world will be twenty years old in the year 2000. It is still growing and learning!

  So, Start Small: Think Big

  
  Lawrence C. Wood
  

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