𝗪𝗼𝗿𝗹𝗱 𝗛𝗲𝗺𝗼𝗽𝗵𝗶𝗹𝗶𝗮 𝗗𝗮𝘆 𝟮𝟬𝟮𝟲 - 𝗔𝗽𝗿𝗶𝗹 𝟭𝟳

𝗧𝗵𝗶𝘀 𝘆𝗲𝗮𝗿’𝘀 𝘁𝗵𝗲𝗺𝗲: "𝗗𝗶𝗮𝗴𝗻𝗼𝘀𝗶𝘀: 𝗙𝗶𝗿𝘀𝘁 𝗦𝘁𝗲𝗽 𝘁𝗼 𝗖𝗮𝗿𝗲" highlights the vital role of early and accurate diagnosis in improving treatment and quality of life for people with haemophilia.

Haemophilia is a rare inherited bleeding disorder caused by a deficiency in clotting factors VIII or IX, primarily affecting males. Yet, 75% of people with bleeding disorders remain undiagnosed globally, delaying life-saving care.

On this 31st World Hemophilia Day, let’s raise awareness, encourage timely diagnosis, and support better access to treatment and prevention for all affected.

Together, we can help save lives and improve care!

#WorldHemophiliaDay #DiagnosisFirstStep #BleedingDisorders #HaemophiliaAwareness #RareDisease #HealthForAll #BloodDisorders #SupportAndCare #SCABPharmacy #BetterDiagnosisBetterCare #GlobalHealth #AccessToTreatment

Can cystic fibrosis be fully cured? Learn about symptoms, treatment options, daily challenges, and a child’s life journey with cystic fibrosis in this helpful guide.
https://hasster.com/blogs/360174/Can-Cystic-Fibrosis-Be-Fully-Cured-Understanding-a-Child-s

#CysticFibrosis #ChildHealth #RareDisease #LungHealth #GeneticDisorder #PediatricCare #HealthAwareness #ChronicIllness #Wellness #MedicalGuide

Medical Denial Compounds Rare Condition Struggles

Megan Hetherington, 27, denied heart valve surgery due to antiphospholipid syndrome. Doctors advise living each day as her last.

#RareDisease, #HeartSurgery, #AntiphospholipidSyndrome, #MedicalDenial, #UKHealth

https://newsletter.tf/woman-denied-heart-surgery-rare-clotting-syndrome/

A 27-year-old woman has been denied a life-saving heart surgery, a situation doctors say means she should 'live every day like it's her last'. This is a stark warning for patients with rare conditions.

#RareDisease, #HeartSurgery, #AntiphospholipidSyndrome, #MedicalDenial, #UKHealth
https://newsletter.tf/woman-denied-heart-surgery-rare-clotting-syndrome/

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
#Bedbound
#Bedridden
#ChronicIllness
#RareDisease

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