While Cystic Fibrosis is considered to be a rare, “orphan” disease, affecting about 70,000 people in total worldwide, the support community that surrounds it is significantly larger, and works tirelessly to support fundraising and advocacy for the disease. Now, a new initiative by one of the world’s leading CF advocacy groups will give those in the fight against CF a new voice.
The Cystic Fibrosis Trust, founded in 1964, is dedicated to supporting and advancing research and clinical care, and providing support and guidance to CF patients and their loved ones. Recently, they have begun forming a Clinical Advisory Group, and are looking for committed, passionate individuals who would like to become members.
The advisory group will be responsible for the following:
- Effective communication between the Trust and cystic fibrosis multi-disciplinary teams;
- The Trust’s published Standards of Clinical Care are accurate and evidence based; and
- Our Consensus Documents are an accurate and up-to-date record of current consensus within professional bodies.
The trust recognizes the essential role CF patients and parents of children with CF play in boosting research and support initiatives, which is why the advisory group is searching for a representative from each group of concerned individuals, who is capable of voicing their peers’ opinions and needs. Those who qualify will have full voting rights.
Once integrated into the group, the representative will serve as a member for 3 years, and will have the unique opportunity to help steer the trust’s plans, actions, and priorities in the ongoing fight against Cystic Fibrosis.
Those interested in serving on the advisory group may e-mail Audrey Michniewicz on or before Saturday, October 25, 2014. The first meeting will then proceed on Monday, November 17, 10:00 a.m. to 4:00 p.m. Follow up meetings will be scheduled every 6 months.