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Starting a new Association

The members of IFPA are very supportive of the formation of national psoriasis associations. Each psoriasis association functioning in the world brings education, hope and support to those who suffer from psoriasis and psoriatic arthritis.

The International Federation of Psoriasis Associations (IFPA) offers the following guidance in forming a national psoriasis association.

The following suggestions address forming an association that is "national" in scope, though the information may be helpful in creating regional or local associations as well.

Once an individual, or group of individuals, discovers a need for a psoriasis association in their country, it may seem to be a daunting task, but extremely rewarding in knowing that an organization exists to help people who live with psoriasis and psoriatic arthritis.

The following is a practical guide to getting a psoriasis association underway:

Contact the governmental agency within your country that oversees the formation of local, regional or national nonprofit organizations for guidance on the specific rules, regulations or laws that govern such activities.

File Articles of Incorporation, or similar documents within your country's government, that describe your association (name, address, and other pertinent information required by the legal system) with the appropriate authorities that oversee nonprofit organizations.

Develop a Mission Statement for your nonprofit psoriasis association. A mission statement defines what your organization does. For example, the mission statement of the National Psoriasis Foundation/USA is:

"Our mission is to improve the quality of life of people who have psoriasis and psoriatic arthritis. Through education and advocacy, we promote awareness and understanding, ensure access to treatment and support research that will lead to effective management and, ultimately, a cure."

Create Bylaws that dictate how your psoriasis association is governed and managed. IFPA member associations are willing to share their bylaws with you.

Set forth your Mission Statement and Bylaws according to the laws regulating nonprofits within your country.

Invite others who are also interested in this endeavor to serve on a Board of Trustees or Board of Directors, who will oversee the management of the association.

Once you have legally established a psoriasis association, it is necessary to remember that nonprofit organizations follow the following principles:

Designate that your national organization is specifically organized for the benefit of people who have psoriasis and psoriatic arthritis.

Income for operating your organization is principally obtained from the public (individuals, government, etc.) or non-commercial interests.

Membership is open to all citizens in your country or to all citizens within a region separated due to linguistics or other circumstances.

Nonprofit organizations do not take direction from commercial enterprise or parties who have a vested financial interest in psoriasis therapies (directly or indirectly) that could compromise the objectivity or credibility as an organization representing people who have psoriasis and psoriatic arthritis.

Create and provide programs that reach out to serve all regions of the country or regions defined by linguistics.

Make sure your organization demonstrates that it represents a national constituency in its communications, fund raising, and volunteers.

Identify medical professionals, dermatologists or nurses, who are supportive of the cause and expert in psoriasis and psoriatic arthritis care. Ask them for support by helping provide guidance with medical issues. For example, in preparing educational literature to distribute to the public. Make sure the information is free of bias.

Join IFPA and form a partnership with other psoriasis associations from around the world. IFPA members share information and resources that may be of benefit in assisting the people you serve.

Practical advice on starting a national association

Volunteers start most associations but at some point it will be necessary to hire a professional staff to succeed. A professional staff gives the organization permanence and is capable of ensuring on-going programs and services.

Contact local universities or colleges to find trainees or interns who could offer trained help with marketing, public relations, fund raising, finance or journalism. Trainees may be transitioned into part-time or full-time employment.

Think small in the beginning and pick projects that can be completed successfully so volunteers or staff members do not become overwhelmed.

Ask for advice and guidance from other national nonprofit organizations.

Look for funding from government programs for nonprofits or find companies that have philanthropic interest.

Create a telephone "hot line" to reach out to people suffering from psoriasis and psoriatic arthritis. Make sure they simply share their personal experiences and do attempt to diagnosis, give treatment advice and recommend doctors. Provide hot line volunteers with "listening training."

Seek out reliable sources of information to create publications and other educational materials. Ask physicians expert in psoriasis or psoriatic arthritis treatment to act as your advisor on medical matters.

Build a website with factual, documented information.

Distribute information about your psoriasis association to medical doctors, hospitals, libraries and other places that may attract psoriasis patients.

Create posters to post in your community and enlist volunteers to do the same in other communities.

Contact the press and see if they will print information about psoriasis and your organization.

Hold educational meetings with knowledgeable speakers.

Collect and maintain a list of everyone who contacts your organization. Solicit their help in building your psoriasis association by volunteering or donating to the cause.

Hold a fund-raising event such as a bake sale, rummage sale, walk-a-thon or use direct mail.

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Contact: IFPA Secretariat / Bellmansgatan 30 / SE-118 47 Stockholm / SWEDEN ‚óŹ E-mail: ifpa@pso.se / Phone: +46 8 556 109 18
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