Patients & Caregivers
Babies Should Sleep in Parents' Room to Reduce SIDS Risk
Among the recommendations to reduce risk of SIDS are to have the baby sleep in the parents' bedroom and to keep soft objects away from the infant's sleeping area. Breastfeeding is also recommended
Why Football Players Should Get Tested for Sickle Cell Trait
While the sickle cell trait is not rare or life-threatening, studies show that participating in physical activities may put someone diagnosed with the trait at higher risk of cardiovascular problems that can be life threatening.
Exercise and Nutrition Still Impacts the Metabolic Syndrome: A Clinical Perspective
When examining metabolic syndrome, lifestyle modification involving disciplined dietary control and increased physical activity can become more critical than medical therapy.
Progeria Research Foundation Seeks Proposals for Research on Hutchinson-Gilford Progeria Syndrome
Deadline for progeria research proposals is September 20, 2016
Progeria Clinical Trial Update
The triple drug study found increased bone mineral density, but no other improvement. A new study is underway with lonafarnib with everolimus.
Advocacy Spotlight: SOLACE organization for LAL Deficiency
The SOLACE organization is a nonprofit group dedicated to increasing shared knowledge about lysosomal acid lipase deficiency (LAL-D).
Advocacy Spotlight: Parent Project Muscular Dystrophy
The mission of Parent Project Muscular Dystrophy (PPMD) is a straightforward one: curing Duchenne muscular dystrophy.
FDA and Medical Devices
Development of Devices for Rare Diseases Remains Challenging
What is Your Definition of Strong?
A photo of 29 year old professional powerlifter David "The Beast" Douglas, and 12 year old Progeria patient, Lindsay Ratcliffe has gone viral.
Although the vast majority of cardiological conditions are fairly common or very common, rare cardiovascular problems continue to strike people around the globe.
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