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Raremark proslijedio/la je Tweet
Thank you
@KaminskiMed for being an integral part of the PF community & for working so hard to give us#HOPEforaCURE. Your work changes lives. Together we can make it easier to#LIVEwithPF while we wait for a cure.

#RaremarkKOLVideoSerieshttps://www.youtube.com/watch?v=EX80815TfGU …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
“The likely truth is that you know one of the 1 in 20 people affected by a rare disease.”
@rarediseaseday 28 days to go!#RareDiseaseDaypic.twitter.com/KAn4SDiem9
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Communicating with doctors isn’t always easy. Sometimes they might use terms that go over your head. Let’s look at a few things you can do on your end that can make communication better between you and your doctors. https://raremark.com/articles/how-can-i-communicate-better-with-my-healthcare-providers--1064 …pic.twitter.com/Z3nphEYXvh
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New hotline for caregivers: Depression. Exhaustion. Burnout. Stress. Those are just some of the words people use to describe their experiences as a caregiver.
@CaregiverAction is trying to provide help with a new caregivers hotline.#rarediseasehttps://www.wxyz.com/news/national/theres-now-a-hotline-specifically-for-caregivers …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
FDA grants Aruvant rare pediatric disease designation for SCD therapy
@GlobalGeneshttps://globalgenes.org/2020/01/10/fda-grants-aruvant-rare-pediatric-disease-designation-for-scd-therapy/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Asking for hands-on support when things get tough: Sometimes we need help to deal with all of life’s demands.
#raredisease https://raremark.com/articles/asking-for-hands-on-support-when-things-get-tough--1127 …pic.twitter.com/A3O01stPfQ
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Raremark announces new appointments. Industry experts Neil Rotherham, Tim Davis and Jeremy Edwards have been appointed as Chairman, Chief Executive Officer and Chief Commercial Officer, to help the company accelerate progress in rare disease research. https://raremark.com/news/article/632facce-ceff-49f0-bad2-cc9e9d78527f …pic.twitter.com/5oZ0sv5JPO
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FDA Approves New Treatments for Rare Diseases
#rarediseasehttps://www.ajmc.com/newsroom/fda-approves-new-treatments-for-rare-diseases …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Quest to use CRISPR against disease gains ground
#rarediseasehttps://www.nature.com/articles/d41586-019-03919-0 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
One of the best ways to deal with a chronic illness is to have a plan. That plan should help you manage your illness, instead of letting it manage you. https://raremark.com/articles/setting-up-a-health-management-plan-to-see-how-you-re-doing--1050 …pic.twitter.com/uxr00c9xJQ
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Raremark proslijedio/la je Tweet
Only 1 week left to submit a photo for the EURORDIS Photo Award! Don’t delay, enter a photo that visually expresses living with a rare disease by 16 January.
#EURORDISAwards2020 https://blackpearl.eurordis.org/photo-award/ pic.twitter.com/5SKnx1vJKW
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Raremark proslijedio/la je Tweet
Our friends over at
@M4RareDiseases are holding their#RareDiseaseDay event with@RoySocMed on 19 Feb bringing together a faculty of top speakers.#Medics, get your tickets for "The unusual suspects: Rare Diseases in everyday medicine" here http://bit.ly/M4RD2020#M4RD2020pic.twitter.com/nXbBgPS3Xc
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'Revolutionary' DNA test can detect thousands of rare diseases in children Patients in England become the first to be routinely offered the cutting edge treatment.
#rarediseasehttps://news.sky.com/story/revolutionary-dna-test-can-detect-thousands-of-rare-diseases-in-children-11900023 …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Decrease in rare genetic diseases possible with A.I. assistance:https://www.sciencetimes.com/articles/24460/20191221/decrease-in-rare-genetic-diseases-possible-with-a-i-assistance.htm …
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Rare Disease Foundations Awarded Nearly $200,000 Through Global Genes' 2020 RARE Patient Impact Grant Program.
#raredisease#rarevoiceshttps://www.prnewswire.com/news-releases/rare-disease-foundations-awarded-nearly-200-000-through-global-genes-2020-rare-patient-impact-grant-program-300973496.html …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Raremark’s Pete Chan on a novel pricing mechanism that might help payers warm to pricey, ultra-orphan drugs
#orphandrugs#raredisease#rarevoice#pharmahttps://www.linkedin.com/pulse/alnylams-bold-plan-insure-health-insurers-pete-chan/ …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Living with a rare condition can have a huge impact on emotional wellbeing and mental health. This publication by
@rarediseaseuk is well worth a read:#raredisease https://www.raredisease.org.uk/wp-content/uploads/sites/7/2018/07/living-with-a-rare-condition-the-effect-on-mental-health-pdf.pdf …pic.twitter.com/iF9y9mMms3
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Do you have trouble remembering to take your medication? There’s a lot to keep track of. Here are some things you can do to stay on top of it.
#raredisease#rareheroes https://raremark.com/articles/do-you-have-trouble-remembering-to-take-your-medication--1098 …pic.twitter.com/NtcpCzty0A
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Rare Disease Q&A: What Rare Diseases Are and Why That Matters
#raredisease#rareheroeshttps://www.einnews.com/pr_news/503901488/rare-disease-q-a-what-rare-diseases-are-and-why-that-matters …Hvala. Twitter će to iskoristiti za poboljšanje vaše vremenske crte. PoništiPoništi -
Raremark proslijedio/la je Tweet
Raising funds for the truly wonderful
@AKUSociety patient group with#coffeemorning - thanks @RaremarkHealth team - top jobpic.twitter.com/kaDh8jvqFl
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