Adult Cystic Fibrosis Committee

What is the adult cystic fibrosis committee?

Cystic Fibrosis Canada is a Canada-wide health charity with over 50 volunteer chapters. The organizations mandate is to help individuals with cystic fibrosis (CF), principally by funding research towards the goal of a cure or effective control for CF; and by supporting high-quality CF clinical and transplant care. The Adult Cystic Fibrosis Committee (ACFC) is a standing committee of Cystic Fibrosis Canada, comprised of adults with cystic fibrosis from across Canada. The ACFC works to support people with CF and enhance the quality of life of individuals living with cystic fibrosis. The Committee undertakes and promotes initiatives to improve access to cystic fibrosis treatment and care, and works to foster and support an engaged and knowledgeable CF community.

The Committee encourages adults with CF from across Canada to get involved!

Why an Adult CF Committee?

Adults with CF offer a unique and personal perspective on concerns and issues that are of interest to all persons with cystic fibrosis.

The ACFC provides direct input into the development of Cystic Fibrosis Canadas policies and positions, identifies issues, and leads advocacy initiatives with, and on behalf of, Cystic Fibrosis Canada.

What does the Adult CF Committee do?

The ACFC has three business meetings a year. Between these meetings, various working groups and subcommittees collaborate on projects. Much of the Committees work revolves around: R  elating concerns of the CF community to Cystic Fibrosis Canadas Board of Directors; R  esponding to questions raised by members of the CF community  elping Cystic Fibrosis Canada advocate for H changes in federal/provincial laws and policies that will positively impact the quality of life for individuals with cystic fibrosis M  onitoring access to CF treatments and medications, and advocating for equitable access O  rganizing an educational day designed to explore and discuss issues relevant to adults with CF P  roducing Circle of Friends, a national newsletter created by and for adults with CF In addition to these ongoing projects, the ACFC takes on new projects each year. These projects are brought forward by members of the ACFC, New ideas are Cystic Fibrosis Canada, always welcome! or the CF community.

What is the structure of the Adult CF Committee?

Adults with CF are voting members of the Adult CF Committee and serve as Chair, Vice-Chair, Regional Representatives (two from each of four defined regions across Canada), and as Editor, Circle of Friends. In addition, the Committee includes a Professional Advisor (usually a member of a CF clinic team) and a representative of Cystic Fibrosis

Canadas Medical/Scientific Advisory Committee, who provide guidance and assistance to the Committee as non-voting members. The Chair of the Adult CF Committee is a voting member of Cystic Fibrosis Canadas Board of Directors.

For a list of current ACFC members, visit http://www.cysticfibrosis.ca.

Cystic Fibrosis Canada chapter Adult CF Liaisons

Each Cystic Fibrosis Canada chapter has an Adult CF Liaison position. The ACFC works with these individuals to liaise between the Committee, the chapter, the CF clinic and the local CF community. These adults ensure that issues and concerns of their local community are communicated to leaders within the organization. Chapter Adult CF Liaisons learn about the work of their chapter, Cystic Fibrosis Canada, and the ACFC.

Why be involved with the Adult CF Committee?

The ACFC provides an opportunity to connect with other Canadian adults with cystic fibrosis and build lasting relationships; to learn and grow by sharing experiences; and to keep current on CF-related issues. The ACFC allows individuals to contribute their skills and talents in the shared goal of helping others with CF.

How to make your voice heard

J  oin the Circle of Friends mailing list and/or contribute articles to the newsletter. Personal stories, articles, and educational pieces are always welcome. Circle of Friends is also available on-line at www.cysticfibrosis.ca, from your CF clinic, or from Cystic Fibrosis Canadas office.  oin the Cystic Fibrosis Canada J Facebook Page: www.facebook.com/CysticFibrosisCanada C  ontact an ACFC member Contact information available at www.cysticfibrosis.ca or contact the Chair at acfcchair@cysticfibrosis.ca. V  olunteer as an Adult CF Liaison Communicate any concerns to the ACFC and help keep your community connected. A  pply for vacant positions on the ACFC Positions are advertised in Circle of Friends, in CF clinics across Canada, and are posted on Cystic Fibrosis Canadas Web site and Facebook Page. C  ontact Cystic Fibrosis Canada and speak to the Coordinator, Community Relations & Resources for more information.

1-800-378-2233 www.cysticfibrosis.ca
Charitable registration: 10684 5100 RR0001

2011-02 | Cette publication est aussi disponible en franais.