The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…
As we head into the last week of August, summer has been flying by, kids are heading back to school, and fall will soon be upon us. I love the cooler weather that fall brings, as I’ve found it’s been harder to breathe in the heat and humidity of…
As I write this, my parents, Diana and Jack, are likely hearing muffled morning sounds from the guest room down the hall. Hard whispers from 4-year-old Jack, tired groans from 2-year-old Maeve, and gurgles or squeaks cutting through the golden light from Gavin the newborn. I know my parents are…
MyMD Pharmaceuticals has secured a 13th U.S. patent protecting its experimental therapy MYMD-1, which is being investigated as a potential treatment for idiopathic pulmonary fibrosis (IPF) and other diseases. The new patent (11,096,933), “Method of Treating Disorders Associated with Chronic Inflammation,” covers the administration of MYMD-1 to…
I am an advocate for my rare disease, but I still can’t describe it. Several weeks ago, I went to the dentist with my husband. It was a hot and humid day, as it always is here in Texas. I was carrying “Cooper,” the name I gave to my…
Treatment with vitamin D’s active form lessened lung scarring, and significantly reduced the levels of fibrotic markers in a mouse model of idiopathic pulmonary fibrosis (IPF), a study reported. Notably, these benefits were associated with vitamin D’s suppression of the renin-angiotensin system (RAS), whose chronic activation promotes the production of…
Six months of treatment with MN-001 (tipelukast), MediciNova’s investigational oral therapy, failed to significantly improve lung function in adults with idiopathic pulmonary fibrosis (IPF), according to data from a small Phase 2 clinical trial. The therapy, however, was associated with some positive effects, such as a reduction in worsening IPF…
Simple breathing exercises as an add-on therapy can safely slow lung function decline and improve quality of life in people with mild to moderate idiopathic pulmonary fibrosis (IPF), a small study reported. After six months of disease-tailored and daily breathing exercises, participants showed significant gains in several measures of…
Registration is now open for Global Genes‘ 2021 RARE Patient Advocacy Summit. This year’s hybrid event will be livestreamed from California Sept. 27-29, and some seats also are available for attending the event in person in San Diego. “Here you’ll have the opportunity to connect and engage with others…
A type 2 diabetes medication, metformin significantly eased lung inflammation and scarring (fibrosis) in a mouse model of silica-induced pulmonary fibrosis (PF), both at early and late stages of the disease. Notably, these benefits were found to be associated with a reduction in oxidative stress, inflammation, fibrotic markers, and…
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