I’ll attend the #EuroNDD Workshop in Warsaw in April. Anyone around the Fediverse going there as well? —> let’s connect!

I’m looking forward to present our work at https://www.findme2care.de AND hear about all the other projects.

Also: I’ll be co-hosting an educational session and roundtable discussion titled „Building Patient Registries under the GDPR – The Good, the Bad and the Ugly“ —> there are a few seats left for conference attendees!

#humangenetics #genetics #RareDiseases #RareDisease #ERN #ERNIthaca #patientregistry

New video posted on The Panicked Diaries Channel!

Kind of a silly topic I suppose, but a lot of us bedridden/bedbound folks have plushies to keep us company.

I go over different collections, and which ones I think are the best!

"Different Stuffed Animal Collections for Bedbound and Bedridden People"

#Disabled
#Bedridden
#Bedbound
#ChronicIllness
#RareDisease

https://youtube.com/watch?v=MG4rKjbNJi4&si=6V1bfsjkbIKkI-7T

New video posted on The Panicked Diaries Channel!

Kind of a silly topic I suppose, but a lot of us bedridden/bedbound folks have plushies to keep us company.

I go over different collections, and which ones I think are the best!

"Different Stuffed Animal Collections for Bedbound and Bedridden People"

#Disabled
#Bedbound
#Bedridden
#ChronicIllness
#RareDisease

https://youtube.com/watch?v=MG4rKjbNJi4&si=Vmeiwl4ZU8q_bYYP

Stiff-Person Spectrum Disorders are rare autoimmune conditions that cause muscle stiffness, painful spasms, and exaggerated startle responses. Early diagnosis matters. 💙

#SPSD #AutoimmuneNeurology #RareDisease #Telehealth #Neurology

Day 32 of me relearning how to walk! I stepped foot on the treadmill for the first time.

I also give some tips on how to incorporate this into your rehabilitation routine, if you are also relearning how to walk!

#Disabled
#RareDisease

https://youtu.be/J4DZAVtJqX4?si=zWOSatX_8JmR-eOK

Doctors say that old people are full of regrets.

I'm trying not to have regrets.

I tend not to watch things like mountain climbing where abled bodied people achieve such bc I start to have feelings of regret.

I have a disability - autism - so I'm happy to watch productions where people overcome their conditions or disabilities.

#raredisease #pwd #disabled #blackdisabled #blackpwd #neurodivergent #blackneurodivergent #blackautistic #blackmastodon

“The growing role of parents as advocates and innovators, the case for a national rare disease champion, and why a more joined-up approach across government, regulators, industry and charities is essential to delivering faster diagnoses and access to life-changing therapies.”

#RareDiseaseDay #raredisease #chronicillness

https://pca.st/episode/cb7574f5-dd62-41ba-986d-686370acc4d6