The Cystic Fibrosis Engagement Network, a project of the Alliance for Patient Access, released a new white paper, “Making Treatment Accessible for Cystic Fibrosis Patients.” The white paper details what’s standing in the way of patient access to new treatments approved to target some of the genetic mutations that cause Cystic Fibrosis – and how addressing bureaucratic barriers could help the 30,000 Americans living with this rare disease. For the patients with specific mutations, these treatments can significantly improve lung function and quality of life.
RARE LUNG DISEASES PATIENT EDUCATION DAY ON CYSTIC FIBROSIS, CHILDREN’S INTERSTITIAL LUNG DISEASE AND PRIMARY CILIARY DYSKINESIA
REGISTER NOW AT:
This event is co-sponsored by the American Thoracic Society, the Cystic Fibrosis Foundation, the Children’s Interstitial Lung Disease Foundation and the Primary Continue reading You are invited to attend a free web-cast event SATURDAY, APRIL 22, 2017
In this blog we provide information related to medical records and their importance to a person with CF.
Nothing in this blog post is meant to be legal advice about your specific situation and is only meant as information.
Medical Records Are Crucial
Detailed and accurate medical records can help with a variety of issues. Medical records are important for those applying for Social Security benefits or undergoing an SSA Continuing Disability Review. Continue reading Medical Records Are Crucial — By Beth Sufian, JD
Cystic Fibrosis Foundation Announces Recipients of First Annual Impact Grants to Programs That Serve People With CF and Their Families
The Cystic Fibrosis Foundation has announced the recipients of its first annual Impact Grants.
The program provides funding to support people with cystic fibrosis who are creating unique projects in their communities that serve people with the disease and their families. Cystic fibrosis is a rare, genetic disease that causes chronic lung infections and premature death.
The 2016 grants award $10,000 each to seven diverse programs across the country — from one that teaches singing as an outlet for creativity and wellness, to others that provide personal fitness and health training to individuals with cystic fibrosis. Recipients were chosen by the CF Adult Advisory Council, an external panel comprised entirely of adults with the cystic fibrosis, in partnership with the CF Foundation.
“People with CF have the greatest insights about how to live with this disease,” said Drucy Borowitz, M.D., vice president of community partnerships at the CF Foundation. “We are honored to support these organizations that harness the power of the CF community to help people with this disease and their families live better lives every day.”
Read the blog here.
The grant award recipients include:
The Cystic Fibrosis Lifestyle Foundation (CFLF), a nonprofit organization that helps people with CF maintain a healthy lifestyle. The CFLF provides assistance to children and adults with CF who demonstrate a financial need and personal desire to improve their physical wellbeing.
The United States Adult CF Association (USACFA), a nonprofit corporation run by adults with CF, offers the community an opportunity to exchange medical and nonmedical information through its quarterly national newsletter, CF Roundtable.
Project CF Spouse is a nonprofit organization dedicated to supporting spouses of people with CF. The grant will be used to grow the 150-person group, expand educational resources and facilitate connections between other spouses as they navigate their own CF journeys.
The sINgSPIRE program, through Breathe Bravely, will provide free, private voice lessons with a qualified voice instructor who will work on strengthening participants’ respiratory systems and improving self-awareness and confidence.
Program NuYou, part of Attain Health, is an online health coaching and personal training program for individuals with CF. Each participant receives time with an integrative health coach and personal trainer, and the program includes weekly check-ins, video conferences and a workout plan that is tailored to individual participant’s needs.
Miles for Cystic Fibrosis supports Project BreatheStrong, which provides grants for children and adults with CF to take part in activities that will improve their mental and physical heath.
Continuing Education for Caregiver/Individuals with CF supports individuals affected by CF through educational workshops that concentrate on various aspects of the disease.
By Katie Dupere
Activism isn’t always accessible — and the Women’s March on Washington is no exception.
For people who might not have the physical ability or stamina to join Saturday’s Continue reading Virtual march makes Women’s March more accessible to people with disabilities
By Stephanie Rath
My father committed suicide when I was four. Being an only child it was just my mom and I. Thankfully we had help. We moved from North Carolina and into the basement of my grandparents. Being a single mom my mother needed help back Continue reading Asking For Help–Guest Blog
By Beth Sufian, JD
Social Security has issued new rules regarding Social Security benefit medical eligibility criteria for people with CF. The new rules will go into effect on October 7, 2016. The following blog post is a summary of the changes and some important things people with CF should know about the changes. A more detailed Continue reading BREAKING NEWS: AN ANALYSIS OF THE NEW SOCIAL SECURITY RULES FOR CYSTIC FIBROSIS.