Byarugaba Umar

Founder & Executive director, African Rare Disease Research Centre ARRC.
rare disease Advocate | Genomics

[Byarugaba Umar @Umarb2k]

https://t.co/fH7ECk2E0S

[Byarugaba Umar @Umarb2k]

Hemophilia in Uganda.
Join in now....

#RareButNotAlone

[Byarugaba Umar @Umarb2k]

#RareButNotAlone #arrc
@nbstv

[Byarugaba Umar @Umarb2k]

If half of your family members are living with diabetes, repeat after me,
#RareButNotAlone

[Byarugaba Umar @Umarb2k]

Every rare disease organization has been started by someone who realized late, that rare diseases aren't a doctor's problem to solve. It's everyone's responsibility because nobody is immune from rare diseases.

#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

Rare diseases globally affect over 300 million people, that's more than HIV, TB and malaria victims combined.
#Rare_is_many #RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

On 28th Feb, Uganda's leading Insurance company ICEA sponsored and took part in Ugandans first rare disease run in Kampala, together with @Makerere @MinofHealthUG @rotaract and @KCCAUG

[Byarugaba Umar @Umarb2k]

In Uganda, over 20,000 babies are born with sickle cell. Sadly 80% , yes, 80% of them don't live to see their 5th birthday.
The MoH has then launched nationwide awareness and screening campaigns to address sickle cell and the impact is already enormous 🙏
@DailyMonitor #arrc

[Byarugaba Umar @Umarb2k]

Globally, pharma companies deliberately ignored developing drugs for rare /orphan diseases due to un profitability of the small patient numbers. In 1983, the US congress passed the Orphan drug act, seducing pharma to consider rare diseases in their priorities.

#RareButNotAlone

[Byarugaba Umar @Umarb2k]

What if i told you that that migraine that has lasted decades, never responding to any meds, brain ct scanning revealing nothing, is actually not a migraine. It's likely a rare disease that needs more than just imaging and endless sumatriptan.

#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

Our people living in areas of Kansanga, makindye, konge and Buziga, we'll be screening for Diabetes, hypertension, cervical cancer and others. A special desk will handle people living with rare, undiagnosed conditions.
Call 0200993232 for more inquiries
#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

63 years.

Thousands of headlines.

Countless labels.

No single conclusive answer.

Until now.

The remarkable story of Mr. Godfrey Baguma's lifelong diagnostic odyssey-and the science that may finally explain a condition present since childhood—is coming soon.
#RareButNotAlone

[Byarugaba Umar @Umarb2k]

I'll be announcing Uganda's top 20 heroes who can contributed tremendously to rare diseases advocacy/awareness.
No. 1 is a special one 😊💓

Share below how you think we can appreciate them.
@MinofHealthUG
@DailyMonitor @nbstv @Makerere
#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

There are over 10,000 different rare diseases, most unheard of even among best doctors. Sickle cell is just one of them, the familiar, the loudest and yet unforgivingly painful.

#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

Sickle cell disease has a "cure" known as casgevy, a gene editing therapy that ends suffering among Sickle cell adults. However, it's price is as painful as the disease itself!

#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

The sad reality is that behind every sickler, lies two seemingly innocent parents who had no idea they were sickle cell carriers.

#RareButNotAlone #arrc

[Byarugaba Umar @Umarb2k]

@PeaceMbaba60607 Just incase

[Byarugaba Umar @Umarb2k]

@agribussiness1 "I pray Elias is treated with MERCY". Lord, what happened to men?