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Rare Disease Day 2024: Date, history and significance
Rare Disease Day 2024: Rare Diseases of the world may not get our attention on a daily basis, even when they should. When very few people get affected by a disease, it may not be a part of the ...
pharmaphorum8mon
Rare Disease Day 2024 – The importance of shining a light on rare diseases
It is also for these reasons that Rare Disease Day, which takes place every February and is coordinated by EURORDIS, is so important. The #LightUpForRare 8 theme highlights the issues faced by ...
BBC3y
Rare Disease Day: The family who lost three children
Mrs Mathieson became chief executive of charity Niemann-Pick UK to help other families Events are taking place around the world on Sunday to mark Rare Disease Day, including the lighting up of ...
Minnesota Daily9d
Parents of children with rare diseases share their stories for Rare Disease Day
The University of Minnesota’s annual Rare Disease Day seminar this year, held at the end of February, explained how patients with rare diseases can utilize telehealth services nationally and ...
This Minnesota council helps people with diseases you’ve probably never heard of
The Minnesota Rare Disease Advisory Council works to help those with rare diseases get screened, diagnosed and treated.
Calvin College3y
Symposium - Rare Disease Network
The 2025 Rare Disease Day Gathering will be held on Saturday, February 22. To receive additional information about the event and to be notified when event registration opens (closer to the date of the ...
pharmaphorum4d
Clinigen educates on early access to rare disease therapies
On Rare Disease Day, Clinigen has launched a campaign to try to encourage doctors and patients to explore how they can get early access to investigational therapies. The ‘What is Possible?’ ...
The Atlantic7mon
What Is It Like to Live With a Rare Disease?
“Rare diseases may individually be rare,” the ... “We knew that we were going to see it through to the end,” she says. On the day she was induced, Sarita asked the nurses to turn off ...
What to Do If Your Child Is Diagnosed With a Rare Disease
After extensive testing, Penny was diagnosed with Dravet syndrome, a serious, genetic form of epilepsy. “When she was 11 months old, we received the results that she had a mutation of the SCN1A gene, ...
YourTango19h
The Symptom I Ignored At Cheerleading Practice Turned Out To Be A Rare, Life-Altering Genetic Disease
FA is a progressive neuromuscular disease that causes loss of coordination and mobility. My parents got my test results the ...
7-Year-Old with Rare Disease — 'Basically Childhood Dementia' — Needs $172,000 Therapy Every 2 Weeks (Exclusive)
“That's the problem with the rare disease community as a whole,” she explains ... “My goal, at the end of the day, is to get ...
Connecticut dad dies from rare mosquito-borne virus he caught in his own backyard – and cases are on the rise
I’m not joking when I say your life can change in the blink of an eye, because that was what happened to us,” his grieving ...