News, Events & Blogs
Interview with RareWear Patient Heidi Woods
The Rare Genomics Institute’s RareWear program connects rare disease patients to medical device providers, which offer free devices to help patients to better monitor and manage their conditions. RareWear is an ongoing program and patients are welcome to apply throughout the year. Learn more about RareWear here: https://www.raregenomics.org/rarewear/home.
Heidi Woods is a RareWear participant who began using her device, a Holter monitor to measure heart rate, earlier this year. Heidi was diagnosed with Ehlers-Danlos syndrome in 2009. Heidi graciously shared her story with us in the hope of helping others who might benefit from the RareWear program.
Remember Undiagnosed Children’s Awareness Day
Undiagnosed Children’s Awareness Day was honored on April 30th, 2021 to increase awareness and understanding of the impact and prevalence of undiagnosed genetic conditions. SWAN UK (Syndromes Without A Name) hosted a Zoom meeting to commemorate the day and to discuss sequencing programs for undiagnosed families. Learn more about Undiagnosed Children’s Awareness Day here!
COVID-19 and Rare Disease Patients
The COVID-19 pandemic has put constraints on all of our lives. Many of our daily interactions now take place virtually. When we do head out of the house, people will of course wear masks and keep their distance from others.
The National Organization for Rare Disorders (“NORD”) is currently soliciting responses to a survey concerning the effectiveness of telehealth appointments for rare disease patients: https://rareaction.org/take-action/#/67.