There Is Someone There for Rare Dads
It's not easy to be a Rare Dad and sometimes it helps to be around other people who are in similar shoes. SALT is a multi-day program created for dads of…
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There Is Someone There for Rare Dads
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This Boy with DMD Makes Mind Over Matter Look Easy
It's no easy battle, but for Tayjus Surampudi and many others, muscular dystrophy is a battle worth getting up and fighting against. Tayjus is a student at Harvard. And if…
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This Boy with DMD Makes Mind Over Matter Look Easy
The Value Of Health: Men’s Health Week
"Health is not valued until sickness comes." - Thomas Fuller June 13-19 is Men's Health Week, and the last day is Father's Day. A great way to stay healthy is…
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The Value Of Health: Men’s Health Week
Coming Soon from the Amyloidosis Foundation!
Amyloidosis Trailer: A Tribute to The Amyloidosis Foundation from katelyn Payne on Vimeo. This trailer for the Amyloidosis Foundation's documentary was created by a student whose mother has amyloidosis. It…
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Coming Soon from the Amyloidosis Foundation!
The Prosthetist Father: Happy Father’s Day!
I wrote this poem about my father. He is not a rare dad, but I feel like he can be an inspiration for those going through hard times. He hurt…
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The Prosthetist Father: Happy Father’s Day!
Know About CRPS? Learn from Burning Nights
Burning Nights is a chronic pain charity in the UK that was set up by Victoria Abbott-Fleming, a CRPS patient and author. The organisation gained official charity status in spring 2016…
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Know About CRPS? Learn from Burning Nights
Not Feeling Better After Acromegaly Treatment?
Still not feeling well? You are not alone! The new, and validated survey instrument on quality of life for patients being treated for acromegaly, developed by Dr. Maria Fleseriu and…
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Not Feeling Better After Acromegaly Treatment?
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Are YOU Going to the MPS Annual Conference?
Come one, come all! Well, if you have mucopolysaccharide (MPS), that is. The 30th Annual Family Conference is taking place this August in Colombus, Ohio and the National MPS Society…
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Are YOU Going to the MPS Annual Conference?
Source: Patient Education Publication, Clinical Center, NIH
Esi es el tratamiento SubQ para la ICV sin crema anestésica
es la inyeccion subcutánea parte de tu plan de tratamiento para la ICV? ¿Alguna vez ha quedado sin crema anestésica antes de una inyección? ¿Es usted un fan de Jim…
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Esi es el tratamiento SubQ para la ICV sin crema anestésica
