Prader-Willi News

March 8, 2021March 8, 2021

The Arc Awarded Comcast NBCUniversal Grant for Special Education Initiative

A $200,000 Comcast NBCUniversal grant has been awarded to The Arc to increase access to educational resources for students of color and economically disadvantaged youngsters with intellectual and developmental disabilities ... Read more

March 5, 2021March 5, 2021

Pink, Green, Blue and Purple Lights Illuminated World for Rare Disease Day

COVID-19 News, Prader-Willi News

Many diseases have their own awareness color — breast cancer is pink, muscular dystrophy is green, and AIDS is red, for example — but what’s the significance of pink, green, ... Read more

March 4, 2021March 4, 2021

Clinical Trials Advance as Tesomet Granted FDA’s Orphan Drug Status

Prader-Willi News

Tesomet, a potential treatment for Prader-Willi syndrome (PWS), has been granted orphan drug status by the U.S. Food and Drug Administration (FDA). Saniona, the therapy’s maker, now plans to initiate ... Read more

March 2, 2021March 2, 2021

Mental Rigidity in PWS Goes Beyond Intellectual Disability

Prader-Willi News

Adults with Prader-Willi syndrome (PWS) have greater mental rigidity than those with matching intellectual disability, but without the disease, and those with normal intellectual level, according to a study from France. ... Read more

February 26, 2021February 26, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

COVID-19 News, Prader-Willi News

Diagnosed with sickle cell disease as a 6-month-old, Tristan Lee has faced a lot of challenges over his 37 years of life. But from a young age, he also learned ... Read more

February 25, 2021February 25, 2021

Soleno Looking to Expand Potential Therapies That Work Like DCCR

COVID-19 News, Prader-Willi News

Soleno Therapeutics has partnered with Vanderbilt University to develop therapies that work as ATP-dependent potassium channel activators for rare diseases, similar to the diazoxide choline controlled release (DCCR) tablets the company thinks ... Read more

February 23, 2021February 23, 2021

PWS Subtypes May Respond Differently to Psychotropic Treatments

Prader-Willi News

A small study exploring gene alterations related to Prader-Willi syndrome (PWS) suggests that subtypes of the disorder have different genetic profiles that may affect response to psychotropic treatments and potential ... Read more

February 22, 2021February 22, 2021

Rare Disease Day at NIH, Set for March 1, Growing Year by Year

COVID-19 News, Prader-Willi News

Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1, will feature panel discussions, patient stories, research updates, TED-style talks, and a ... Read more

February 19, 2021February 19, 2021

Eurordis Survey: Healthcare Experience Worse for Rare Disease Patients

Prader-Willi News

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare ... Read more

February 18, 2021February 18, 2021

Growth Hormone Therapy Also Benefits Adults, IPWSO Argues

Prader-Willi News

Growth hormone therapy should be universally available, given to adults as well as children with Prader–Willi syndrome (PWS) and based solely on a genetic PWS diagnosis. This is the position ... Read more

February 16, 2021February 16, 2021

Tonix Licenses Via-the-nose Treatment Technology From Inserm

Prader-Willi News

Tonix Pharmaceuticals has licensed technology from the French National Institute of Health and Medical Research (Inserm) that it aims to use for treating failure to thrive in Prader-Willi syndrome. The ... Read more

February 11, 2021February 11, 2021

Tryp Therapeutics Readies First Trial of TRP-8802 for Excessive Appetite

Prader-Willi News

Tryp Therapeutics announced plans to launch a Phase 2a clinical trial evaluating the potential of its investigational oral candidate TRP-8802 (synthetic psilocybin) at reducing excessive appetite in people with Prader-Willi syndrome (PWS) ... Read more

February 11, 2021February 11, 2021

Pandemic Won’t Stop Rare Disease Day on Feb. 28

COVID-19 News, Prader-Willi News

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the ... Read more

February 9, 2021February 10, 2021

COVID-19 Pandemic ‘Significantly’ Affected DCCR Phase 3 Trial, Soleno Says

COVID-19 News, Prader-Willi News

The COVID-19 pandemic — which took a heavy toll on people with Prader-Willi syndrome (PWS) and their families, according to a recent webinar — likely influenced the results of the ... Read more

February 4, 2021February 4, 2021

Antidepressant Sertraline May Help Control Temper Outbursts

Prader-Willi News

The antidepressant sertraline may help control temper outbursts in people with Prader-Willi syndrome (PWS), a small study suggests. Among 13 patients who completed six months of treatment with sertraline, the ... Read more