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Dec

CFFC Facebook Posts – November 2019 – Part 2

11/16/2019 – Research Blast on… CFRD – Cystic Fibrosis Trust’s quirky look at the pancreas and CFRD.

11/17/2019Deadline: CF Mental Health Survey – You have an opportunity to influence treatment guidelines for mental health. [Deadline is December 6th]

11/18/2019Patients Adhere Well to CFTR Therapies But High Costs Could Undermine Use, Pharmacy Study Says – With all the excitement generated by the approval of Trikafta, we’re posting a two links today that provide some balance by looking at paying for the treatments. This link points to the impact of out-of-pocket-cost on dosage compliance.

11/18/2019Vertex Reaches Agreement for CF Medications in Northern Ireland and Wales – With all the excitement generated by the approval of Trikafta, we’re posting a two links today that provide some balance by looking at paying for the treatments. This link reminds us that insurance coverage vary from country to country.

11/19/2019 Interview: Ella Balasa Chats With CF Researcher About Phage Therapy – An individual who had successful phage therapy has a conversation about the treatment with the lead of the Foundation’s Infection Research Initiative.

11/20/2019Disease-causing protein in cystic fibrosis has ancient roots in sea lamprey – A topic that arises in family experiencing CF is the ultimate source of the defective genes. This study indicates that the search has to go back millions of years.

11/21/2019UI Researchers Develop Breakthrough Approach to Gene Therapies for Respiratory Diseases – This study points to further advances in correcting CFTR mutations within airway cells.

11/22/2019My Life With CF Makes Me Feel Like a Rose Among Thorns – Another story of a woman who refuses to be defined by CF.

11/23/2019CF-related Diabetes Affects Girls More Often and at Younger Age than Boys, European Study Shows – Aside from the interesting conclusions drawn in this study, the article highlights the importance of the CF registries maintained here and abroad.

11/25/2019How the Trust is working to tackle infections – A look at the multiple paths being pursued in the UK to manage CF infections.

11/26/2019Facing and Embracing CFRD – A reminder that CFRD needs the same level of attention as lung health from both the person living with CF and the care team.

11/27/2019Giving My Anxiety a Name – An interesting look at the role tracking your clinic statistics may have in your mental health.

11/28/2019Attending This Year’s North American Cystic Fibrosis Conference Gave Me Hope – Happy Thanksgiving! This blog about one person’s experience at the NACFC demonstrates the promises of a better future we can all be thankful for.

11/29/2019Dangerous bacteria communicate to avoid antibiotics – Further knowledge about how Pseudomonas avoids antibiotics.

11/30/2019Creating a Smooth Transition to Transplant Clinic – As this blogger points out, the transition to a transplant center can be more challenging than the transition from pediatric to adult care.


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