Angela Jocson

PSM in Biotechnology, Rare Disease Patient Advocate, @_allstripes.

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

We need your help, calling those living with PROS or someone you know does. We 👇🏻are organising a meeting to educate more docs on PROS. This is your chance to let them know what it’s like. You can reply via: [email protected] or in the comment here. Thanks ☺️

[AllStripes @_allstripes]

In this video from @CheckRare, Ankit Mehta, MD, Nephrologist and Program Director for the Department of Internal Medicine at Baylor University Medical Center, discusses female patients with #Fabry disease. https://t.co/E6PgUvdK3s

[AllStripes @_allstripes]

Kathy is an Ambassador for the AllStripes #PropionicAcidemia research program. If you are a person, or a family member of a person with PA, and are interested in contributing medical history to advance new treatments, learn more at https://t.co/IMPOkEfAHA

[AllStripes @_allstripes]

In an article for our Staff Story series, our Chief of Staff, Aditya Shah, shares the tricontinental journey his family went through to receive a Rett syndrome diagnosis for his daughter, Lila. https://t.co/Om4WFN27xm

[Beyond the Diagnosis @BeyondtheDx]

Kicking off Rare Disease Month in a BIG way!!! Thanks to @havashealth and @H4BBoston for this dream come true!! #RareInTimesSquare #RareDiseaseDay #RareDisease

[AllStripes @_allstripes]

Have you listened to Parents As Rare? It’s a series in @MitoAction’s Energy in Action podcast in which host @RareDiseaseDad speaks to individuals who are both parents and personally impacted by a rare or chronic condition. Check out the latest episodes: https://t.co/ThfDxqERjj

[DLG4 SHINE @DLG4SHINE]

This worry is one that consumes the mind of likely every rare disease parent. Who will take care of our children when we, their parents, no longer can?

#specialneeds #disabilityawareness #dlg4 #shinesyndrome #disability #epilepsyawareness #epilepsy #raredisease #nonprofit

[AllStripes @_allstripes]

When Carina’s daughter, Callaway, was born, it became clear very quickly that something was wrong. A few days later, Callaway was diagnosed with #MethylmalonicAcidemia. Read on to earn more about this family’s story: https://t.co/G3xPRFGWbK

[AllStripes @_allstripes]

A new research study on #MyastheniaGravis explores the relationship between the shedding of MuSK protein & anti-MuSK antibodies in individuals with myasthenia gravis. Check out this article from @MyastheniaGNews that discusses this research: https://t.co/rhOH4kH4Rc

[AllStripes @_allstripes]

Check out our latest research poster on the diagnostic journeys of patients with #GM1. Using the AllStripes #RWD platform, we used de-identified data from medical records to characterize the path to diagnosis for 27 research participants with GM1. https://t.co/ADQraAk0va

[AllStripes @_allstripes]

Have you spoken to your family about health history? Here is why family health history awareness is important and how to take action. https://t.co/anCdYcVC2Y

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

Lindsey’s journey with her rare condition has evolved, and so has her ability to fiercely advocate for her needs as a patient and person. Check out her blog here: https://t.co/BboCIkb93w #PROS #CLOVES #TrippelTrenaunay #AllStripes @_allstripes

[AllStripes @_allstripes]

If you have or care for someone with a rare disease, you know how important it is to find knowledgeable specialists. @CurePSP has designated 2 more CurePSP Centers of Care, bringing the total to 30 centers across the US. https://t.co/hA6v2wGD4w

[AllStripes @_allstripes]

“I wish more people knew that Fabry is not just about being physically ill, there is also an emotional aspect to it.” https://t.co/6Tw3MWtjwf

[Gillian Sapia RN @GillianHSapia]

Never believe the lie that you are just one voice, one person or just one gene. Get loud share your #rare stories. I’m one person snd I know I’ve made a difference. I never thought I would but one voice can do big things. Please join me and tell the government you matter!

[AllStripes @_allstripes]

.@FabryOrg is hosting its first Fabry Women’s Summit on November 11-13! Programming will include a caregiver roundtable, presentations on heart health and self-advocacy, networking sessions and more. https://t.co/T1WDPu5B6U

[Rare Disease Advisor - Pompe Disease @rda_pompe]

It will always be touchscreen technology over buttons for me, but I keep my hand and fingers strong by using one pound barbells. #POMPE
- Keyana Sullivan

[GoPI3Ks (Genetic Overgrowth PI3K Support) @GoPI3Ks]

We are proud media partners of @camraredisease #RAREfest22 helping put people living with #RareDisease centre-stage! Join us on Nov 26th for this vibrant,, hands-on festival celebrating science, tech & community. Get free tickets for the whole family https://t.co/uHgV4595H4

[AllStripes @_allstripes]

“Being born with a disability that has evolved or progressed in my lifetime, I’ve had to adapt every moment.” Read more about how Maria, who lives with Morquio syndrome, brings a creative approach to her access tools. https://t.co/txj3pWweTV

[AllStripes @_allstripes]

Drug repurposing is like recycling: It’s the process of finding new uses for drugs that already exist. As a rare patient or caregiver, here is everything you need to know about drug repurposing. https://t.co/fWYYO8OI0Z