Here is some possibly very good news on the forefront.

Today,Representatives Eric Swalwell (D-CA), Scott Peters (D-CA), and Tom Emmer (R-MN) introduced bipartisan legislation to better diagnose and treat genetic disorders like cancer and rare diseases, particularly in children. This legislation was included in Representatives DeGette and Upton’s CURES 2.0, legislation that was introduced today, which would improve how drug treatments and therapies are delivered to patients. Bipartisan legislation will help diagnose and treat genetic disorders like cancer and RARE diseases, particularly in children. This is extremely good news being that nearly 80% of rare diseases are genetic and 70% begin in childhood. 

“This much-needed legislation will help provide hope and relief to millions of children living with a mysterious and rare disease,” said Rep. Eric Swalwell.”

Although a significant number of rare diseases are genetic, they have a varied etiology:  infectious, autoimmune, nutritional, and environmental diseases and cancers. Regardless of etiology, living with a rare disease can have a detrimental effect on mental well-being. While this could be said of any disease or chronic condition, the mental impact can be amplified in the case of rare diseases. Anxiety, stress, low mood, emotional exhaustion, and suicidal thoughts, have all been identified in the rare disease population. https://www.psychiatryadvisor.com/home/topics/general-psychiatry/rare-diseases-a-psychiatric-concern/

“Genetic and genomic testing technology is improving every day, and this bill provides a critical step forward for making these tests more accessible to pediatric patients.”“Genetic and genomic testing options are the future of medicine. Offering this service will help us understand the individual needs of patients and ensure we can provide answers for millions of families with children struggling with unknown illnesses. Making these tests more accessible will save lives, revolutionize our health care industry, and ease the burden on our system through prevention instead of treatment,” said Rep. Tom Emmer.

https://swalwell.house.gov/media-center/press-releases/swalwell-peters-emmer-introduce-bill-make-genetic-and-genomic-testing