Month: February 2021

February 25, 2021February 25, 2021

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

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

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

ALS News Today, COVID-19 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

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

COVID-19 News, SMA News Today

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

Rare Disease Day ‘Patient Hero’ Raises Awareness Through Fashion

Angelman Syndrome News, COVID-19 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

I AM ALS ‘Playbook’ Aims to Foster Patient Advocacy Groups

ALS News Today

I AM ALS, a nonprofit working for people affected by amyotrophic lateral sclerosis (ALS), is offering a guide to help others who want to follow in its footsteps — creating a ... Read more

February 25, 2021February 25, 2021

Project to Test Virtual Reality Weight-Shifting Strategies for Gait Freezing

Parkinson's News Today

A three-year U.K. project will investigate whether weight-shifting strategies, developed and tested using virtual reality, can help people with Parkinson’s disease to overcome freezing of gait — when patients feel ... Read more

February 25, 2021February 25, 2021

MS in Harmony is First Digital Music Therapy for MS Patients

Multiple Sclerosis News Today

Bristol Myers Squibb (BMS) and the American Music Therapy Association (AMTA) are partnering with singer and actor Ben Platt, and dancer, choreographer and actor Courtney Platt, to launch MS in Harmony, ... Read more

February 25, 2021February 25, 2021

Parkinson’s UK Invests Up to £800,000 in New Trial Testing GDNF

Parkinson's News Today

Parkinson’s UK is paving the way for a future clinical trial that will continue to test a naturally occurring protein, the glial cell line-derived neurotrophic factor or GDNF, as a ... Read more

February 25, 2021February 25, 2021

Girls With CF Need Reproductive Counseling, Study Asserts

Cystic Fibrosis News Today

Female adolescents with cystic fibrosis (CF) should be offered contraceptive counseling and informed about pregnancy risks, a long-term study shows. Adding a gynecologist to the medical team following female patients ... Read more

February 25, 2021February 25, 2021

Neuro Key ‘Open Door’ Booklet Gives Voice to FA Patient, Caregiver Stories

Friedreich's Ataxia News

Real-life stories from people affected by Friedreich’s ataxia (FA) — featured in a new educational resource —capture the challenges of living with a complex and largely misunderstood disorder, and help to ... Read more

February 24, 2021February 24, 2021

Being Part of the ‘Rare’ Family Brings Unforeseen Blessings

SMA News Today Columns

As my husband, Randy, and I slipped into our mid 40s, God plopped a little surprise into our middle-aged laps: a pregnancy. Totally unprepared in all ways for a baby, ... Read more

February 24, 2021February 24, 2021

Supporting My Dad as He Faces Unique Challenges With Parkinson’s

Parkinson’s News Today Columns

I don’t have Parkinson’s disease, but my dad does. And sometimes I wonder how lonely it can be. Even when we as loved ones try to understand the disease, experiencing ... Read more

February 24, 2021February 24, 2021

Beauty for Ashes: Finding the Good in the Suffering

Ankylosing Spondylitis News Columns

Have you ever felt like you drew the short end of the stick in life? Do other people seem to have more reasons to be joyful than you do? When ... Read more

February 24, 2021February 24, 2021

Study Finds Poor Mineralization in Teeth of XLH Children

XLH News Today

The teeth of children with X-linked hypophosphatemia (XLH) are marked by defects in mineralization affecting the three layers of hard dental tissue — enamel, dentin and cementum — a small ... Read more

February 24, 2021February 25, 2021

New Cut-off Levels for Blood VLCFAs May Aid X-ALD Diagnosis

Adrenoleukodystrophy News

Proposed new cut-off levels for values of very long-chain fatty acids, or VLCFAs — whose buildup characterizes X-linked adrenoleukodystrophy (X-ALD) — show higher sensitivity and specificity for detecting genetically confirmed ... Read more