Just got word that #RareDiseaseDay25 was canceled rather than postponed. I am so sad for the patients who were looking forward to feeling seen and understood at this event. I am sad for the organizers who worked so hard to plan it and now won't be able to see their event come to fruition.
April 11, 2025 at 5:02 PM
Just got word that #RareDiseaseDay25 was canceled rather than postponed. I am so sad for the patients who were looking forward to feeling seen and understood at this event. I am sad for the organizers who worked so hard to plan it and now won't be able to see their event come to fruition.
#RareDiseaseDay25 activities still in full flow! A trip to the parliamentary reception at Westminster, a day talking to the public & HCPs at @cuhnhs.bsky.social & now Rare-I-Tea party with our families! Stripes at the ready
March 2, 2025 at 1:04 PM
#RareDiseaseDay25 activities still in full flow! A trip to the parliamentary reception at Westminster, a day talking to the public & HCPs at @cuhnhs.bsky.social & now Rare-I-Tea party with our families! Stripes at the ready
UCLA scientists have been making strides toward better treatments for Duchenne muscular dystrophy, a rare, muscle-wasting disease, including helping get FDA approval for Sarepta’s gene therapy Elevidys. ➡️ newsroom.ucla.edu/stories/pivo...
#RareDiseaseDay #RareDiseaseDay25
#RareDiseaseDay #RareDiseaseDay25
February 28, 2025 at 5:49 PM
UCLA scientists have been making strides toward better treatments for Duchenne muscular dystrophy, a rare, muscle-wasting disease, including helping get FDA approval for Sarepta’s gene therapy Elevidys. ➡️ newsroom.ucla.edu/stories/pivo...
#RareDiseaseDay #RareDiseaseDay25
#RareDiseaseDay #RareDiseaseDay25
Even on #rarediseaseday25
#rarediseaseday
#raredisease
Most of all pictures are without an ALT Text.
I can't read your Pic,because of my Disease #IIH
Like other blind people or people who can't see very well.
ALT Text, always!
#rarediseaseday
#raredisease
Most of all pictures are without an ALT Text.
I can't read your Pic,because of my Disease #IIH
Like other blind people or people who can't see very well.
ALT Text, always!
February 28, 2025 at 1:54 PM
Even on #rarediseaseday25
#rarediseaseday
#raredisease
Most of all pictures are without an ALT Text.
I can't read your Pic,because of my Disease #IIH
Like other blind people or people who can't see very well.
ALT Text, always!
#rarediseaseday
#raredisease
Most of all pictures are without an ALT Text.
I can't read your Pic,because of my Disease #IIH
Like other blind people or people who can't see very well.
ALT Text, always!
Haha. Selbst mit dieser krassen Krankheit,die nachweislich Lichtempfindlichkeit beeinhaltet,kriegste von keinem Arztmensch oder KK Hilfe. Weder Neuro noch Augendoc. Aber klar,EU Rente nur befristet, Wunderheilung bestümmt incoming. #IIH #raredisease #rarediseaseday25
February 28, 2025 at 8:40 AM
Haha. Selbst mit dieser krassen Krankheit,die nachweislich Lichtempfindlichkeit beeinhaltet,kriegste von keinem Arztmensch oder KK Hilfe. Weder Neuro noch Augendoc. Aber klar,EU Rente nur befristet, Wunderheilung bestümmt incoming. #IIH #raredisease #rarediseaseday25
#rarediseaseday25
In Deutschland gibt es 4 Millionen Menschen mit einer seltenen Erkrankung.
Ich bin einer davon. Es hat über 10 Jahre zur Diagnose gebraucht. Ich glaube nicht daran,das sich irgendwas verbessert. 🤷
#maskup ,schützt Menschen wie mich.
In Deutschland gibt es 4 Millionen Menschen mit einer seltenen Erkrankung.
Ich bin einer davon. Es hat über 10 Jahre zur Diagnose gebraucht. Ich glaube nicht daran,das sich irgendwas verbessert. 🤷
#maskup ,schützt Menschen wie mich.
Wie seltene Erkrankungen besser erkannt werden sollen#SelteneErkrankungen#Gesundheit#Gesundheitssystem
Wie seltene Erkrankungen besser erkannt werden sollen
Für Menschen mit seltenen Erkrankungen könnte es leichter werden, eine Diagnose zu bekommen.
www.tagesschau.de
February 28, 2025 at 6:08 AM
#rarediseaseday25
In Deutschland gibt es 4 Millionen Menschen mit einer seltenen Erkrankung.
Ich bin einer davon. Es hat über 10 Jahre zur Diagnose gebraucht. Ich glaube nicht daran,das sich irgendwas verbessert. 🤷
#maskup ,schützt Menschen wie mich.
In Deutschland gibt es 4 Millionen Menschen mit einer seltenen Erkrankung.
Ich bin einer davon. Es hat über 10 Jahre zur Diagnose gebraucht. Ich glaube nicht daran,das sich irgendwas verbessert. 🤷
#maskup ,schützt Menschen wie mich.
#RareDiseaseDay25
#Language is our ability to understand & express ourselves using vocabulary & grammar.
In some rare genetic conditions, like Phelan-McDermid syndrome, the size of an individual’s genetic deletions correlates with their language ability.
See www.geneticsofspeech.org.au
#Language is our ability to understand & express ourselves using vocabulary & grammar.
In some rare genetic conditions, like Phelan-McDermid syndrome, the size of an individual’s genetic deletions correlates with their language ability.
See www.geneticsofspeech.org.au
February 27, 2025 at 8:33 PM
#RareDiseaseDay25
#Language is our ability to understand & express ourselves using vocabulary & grammar.
In some rare genetic conditions, like Phelan-McDermid syndrome, the size of an individual’s genetic deletions correlates with their language ability.
See www.geneticsofspeech.org.au
#Language is our ability to understand & express ourselves using vocabulary & grammar.
In some rare genetic conditions, like Phelan-McDermid syndrome, the size of an individual’s genetic deletions correlates with their language ability.
See www.geneticsofspeech.org.au
#RareDiseaseDay25
#Stuttering is a motor speech disorder that is quite common in the general population. Most causes of stuttering are unknown.
So far 5 rare genes have been identified to cause stuttering in some individuals: GNPTAB, GNPTG, NAGPA, AP4E1 & PPID
See www.geneticsofspeech.org.au
#Stuttering is a motor speech disorder that is quite common in the general population. Most causes of stuttering are unknown.
So far 5 rare genes have been identified to cause stuttering in some individuals: GNPTAB, GNPTG, NAGPA, AP4E1 & PPID
See www.geneticsofspeech.org.au
February 23, 2025 at 12:09 PM
#RareDiseaseDay25
#Stuttering is a motor speech disorder that is quite common in the general population. Most causes of stuttering are unknown.
So far 5 rare genes have been identified to cause stuttering in some individuals: GNPTAB, GNPTG, NAGPA, AP4E1 & PPID
See www.geneticsofspeech.org.au
#Stuttering is a motor speech disorder that is quite common in the general population. Most causes of stuttering are unknown.
So far 5 rare genes have been identified to cause stuttering in some individuals: GNPTAB, GNPTG, NAGPA, AP4E1 & PPID
See www.geneticsofspeech.org.au