New member procedure
When CFW is approached by a country to become a member the following procedure is put into place.
All requests are forwarded to the CFW staff.
An email is sent from the CFW staff to the requesting country with the following text;
Thank you for contacting Cystic Fibrosis Worldwide and for your interest in becoming a member of the international CF community.
In order to become a member of CFW please send a formal letter of request directed to the CFW Board. This request should be emailed to Executive Director Christine Noke at cnoke @ cfww.org or mailed attention:
Cystic Fibrosis Worldwide
210 Park Avenue, #267
Worcester, MA 01609
Evka 3 Mahallesi
127/19 SOKAK NO/25
Your letter of request and information will be forwarded to the CFW Board of Directors who will make a decision.
A formal letter of reply will be sent to you following the Board of Directors decision.
Your letter of request should contain details of your organizationâ€™s mission, vision and goals. If your organization has formal by-laws, strategic plan etc, it would be helpful for this to also be included. CFW can provide you with a template to develop your strategic plan if requested.
If your request is accepted, membership to CFW will offer you one page on the CFW website in our member section. You may use this page to detail information about your organization. You must submit all text in English to firstname.lastname@example.org and email@example.com for inclusion on the CFW website. CFW reserves the right to refuse to post information if we determine content is unacceptable.
Your membership also includes one free copy of the CFW Newsletter mailed to the address you provide. The CFW Newsletter is published 3 times per year. You may submit articles to be published in the CFW Newsletter. All articles will be reviewed by the CFW editorial staff. CFW reserves the right to refuse articles if content is found to inappropriate. You may submit articles to editor @ cfww.org.
Membership of CFW also provides you with contact details for the other CFW member countries and our international network of medical advisors.
All members are invited to attend the CFW Annual Business Meeting. Details of the Annual Business Meeting will be sent to the contact information you provide a minimum of 90 days prior to an upcoming meeting.
There are two forms of membership to CFW.
Associate Membership includes a minimum annual membership due of $20.00. This must be paid upon acceptance to CFW. Associate Members shall be not-for-profit organizations active in the field of cystic fibrosis, and individuals affected by cystic fibrosis who shall be at least eighteen years of age. Only Voting Members shall have voting rights.
Voting Membership includes membership dues based on the current member dues formula. Voting Members are national cystic fibrosis organizations.
The obligations of the Members includes the following: (i) to pay membership dues, in accordance with a schedule determined by the Members, except as otherwise provided herein; (ii) to comply with CFW By-laws and any regulations and resolutions adopted by the Board of Directors, the Members or the officers of the Corporation; not to prejudice the Corporationâ€™s interests; and (iv) to accept and perform any other obligations which may arise from membership in the Corporation.
As a member you will receive a copy of the CFW 5 year strategic plan, CFW By-Laws and information on the formulation of annual member dues. This will be mailed to the address you provide upon your acceptance as a member.
What do we do?
Key Areas of Focus
Cystic Fibrosis Worldwide works in a number of areas.
1. Capacity building for Cystic Fibrosis Associations and Cystic Fibrosis Worldwide members;
a. Through the global network formed by the many Cystic Fibrosis Worldwide member countries and partners, newly formed Cystic Fibrosis Associations can access an international support group. Resources that develop infrastructure for long term sustainability and growth are made available.
2. A platform for education and the exchange of information globally;
a. Through vehicles such as the Cystic Fibrosis Worldwide Website, Newsletter and Conferences, we reach people in over 70 countries.
3. Global voice for Cystic Fibrosis people with CF;
a. Cystic Fibrosis Worldwide actively lobbyâ€™s for improved care and access to necessary medication for people with CF globally.
KEY ACTIVITY AREAS
We have identified six major activity areas of the organization:
Key Activity 1 â€“ Capacity Building for Cystic Fibrosis Associations globally
Key Activity 2 â€“ Educate parents, people living with cystic fibrosis and Medical/Health Professionals in the treatment and care of cystic fibrosis
Key Activity 3 â€“ Provide local and international policy and political support to Cystic Fibrosis Associations and people living with cystic fibrosis
Key Activity 4 â€“ Act as a Key Source of international cystic fibrosis information and resources
Key Activity 5 â€“ Support cystic fibrosis clinical care development with a focus on developing countries
Key Activity 6 â€“ Business Management/ Development
Cystic Fibrosis Worldwide develops an annual business plan and budget. Members who seek assistance from CFW should submit requests to the executive staff at cnoke @ cfww.org. All requests will be reviewed by the CFW board of Directors. If your request is accepted we will work with you to develop a program that would be included in upcoming annual business plans. It should be understood that CFW has limited capacity and we do not support the purchase of medication for patients, salaries for medical professionals or provide funding for individuals education.
We look forward to receiving your formal letter of request and again thank you for your interest in Cystic Fibrosis Worldwide.
Signed by CFW executive staff.