COVID-19 News

May 6, 2021May 6, 2021

Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients

COVID-19 News, FAP News Today

Note: This article was updated to include information from a Hopkins study published on May 5, 2021, of responses after a second vaccine dose was given to transplant patients. Long before COVID-19 ... Read more

May 6, 2021May 6, 2021

Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients

COVID-19 News, Porphyria News

Note: This article was updated to include information from a Hopkins study published on May 5, 2021, of responses after a second vaccine dose was given to transplant patients. Long before COVID-19 ... Read more

May 6, 2021May 6, 2021

In Interviews, PWS Caregivers Find DCCR Helps to Ease Troubling Behaviors

COVID-19 News, Prader-Willi News

In interviews, most caregivers of people with Prader-Willi syndrome (PWS) reported an easing in patients’ behavioral symptoms after 13 or more weeks of treatment with diazoxide choline controlled release (DCCR) tablets ... Read more

May 6, 2021May 6, 2021

$10M Will Boost Research, Care, Education Programs

COVID-19 News, Parkinson's News Today

The Parkinson’s Foundation is investing an additional $10 million to support research, care, and education programs in order to improve the lives of people with Parkinson’s disease in the U.S. ... Read more

May 6, 2021May 6, 2021

CF Awareness Film Festival Seeks Submissions

COVID-19 News, Cystic Fibrosis News Today

People living with cystic fibrosis (CF) are invited to participate in CF Awareness Month by submitting entries for the CF Awareness Film Festival, taking place virtually May 24–31. Supported by the ... Read more

May 5, 2021May 5, 2021

Camp Footprint Returns as Virtual Adventure for Youth With CMT

Charcot-Marie-Tooth News, COVID-19 News

Children and teenagers with Charcot-Marie-Tooth (CMT) disease have until May 15 to sign up for this year’s edition of Camp Footprint, which will be held virtually from Aug. 2 to ... Read more

May 5, 2021May 5, 2021

UK NICE Expands Access to Spinraza for SMA Type 3

COVID-19 News, SMA News Today

A decision from England’s National Institute for Health and Care Excellence (NICE) will make Spinraza (nusinersen) available to people with spinal muscular atrophy (SMA) type 3 who are unable to ... Read more

May 5, 2021May 6, 2021

Veklury-Dexamethasone Combo Safely Treats COVID-19 in 3 MG Patients

COVID-19 News, Myasthenia Gravis News

Three patients with myasthenia gravis (MG) were safely treated for COVID-19 with a combination of the antiviral medication Veklury (remdesivir) and the anti-inflammatory dexamethasone, while having no apparent worsening of ... Read more

May 5, 2021May 5, 2021

Activities Abound for Vasculitis Awareness Month

ANCA Vasculitis News, COVID-19 News

Activities ranging from sporting wearable art to highlighting “patient heroes” are underway to mark Vasculitis Awareness Month (VAM), set aside each May to call attention to this rare autoimmune disease. ... Read more

May 4, 2021May 4, 2021

Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients

COVID-19 News, Pulmonary Hypertension News

Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often are a lifelong requirement after a transplant, add an ... Read more

May 4, 2021May 4, 2021

New, Easier Smell Test May Better Detect Parkinson’s at Early Stages

COVID-19 News, Parkinson's News Today

A rapid, inexpensive, and easy-to-use test can help to assess a loss of smell, and with greater accuracy than current “scratch and sniff” tests, allowing neurological disorders like Parkinson’s disease to be ... Read more

May 4, 2021May 4, 2021

Variety of Advocacy, Fundraising Events Mark ALS Awareness Month

ALS News Today, COVID-19 News

National Amyotrophic Lateral Sclerosis Awareness Month, recognized in the U.S. each May since 1992, continues to unite patients, family, friends, and advocacy groups around shared goals of raising public awareness ... Read more

May 4, 2021May 4, 2021

Despite COVID Vaccinations, Caution Still Crucial for Transplant Recipients

COVID-19 News, Pulmonary Fibrosis News

Long before COVID-19 changed the world, organ transplant recipients were wearing masks to shield themselves from airborne threats. Immunosuppressive medicines, which often are a lifelong requirement after a transplant, add an ... Read more

May 3, 2021May 3, 2021

Virtual Events on Tap Globally for May, EDS and HSD Awareness Month

COVID-19 News, Ehlers-Danlos News

Scores of virtual events are on tap for global EDS and HSD Awareness Month, observed each May. The activities are focused on heightening awareness of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum ... Read more

May 3, 2021May 3, 2021

CF Awareness Month Packed With Events, Online and Outdoors

COVID-19 News, Cystic Fibrosis News Today

Throughout May, Cystic Fibrosis (CF) Awareness Month, people will connect to share stories on social media, participate in fundraising events across the U.S., and help bring greater public understanding of ... Read more