Kate | Patient & Healthcare Advocacy

SMA warrior & health policy advocate. Weekly correspondent on @PatientsRising podcast. Link below to interview with me on the pod! Personal: @katepecora

[Kate | Patient & Healthcare Advocacy @KateTheAdvocate]

My profile has a new look! I’m excited to have partnered with @patientsrising to share the healthcare access stories from patients across the US. 1/3

[Sarah Nauser @SarahNauser]

“It is just so hard to watch” so people just disappear from your life for no reason other than ALS. My response, try living with it. Or I have ALS but ALS certainly doesn’t have me. No I can’t walk and rely on a breathing machine. Once you get past that you’ll see I’m still me.

[Richard Engel @RichardEngel]

Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease. To support the research: https://t.co/M8LV8SHv6r

[Zahra Khan (she/her) ♿️🦻🏼 زہرا خان @hellozeik]

As long as nondisabled ppl get to dictate what’s “reasonable” in “reasonable accommodations” we won’t have justice in how disability accommodations are provided

[Patients Rising @patientsrising]

2/

🚌 73% had to reschedule an appointment because they were unable to travel to it

🚗 79% were not confident about securing transport for non-emergency medical situations

🚕 43% did not know if their insurance covers non-emergency medical transportation

[Patient’s Right to Know 340B @340BPatients]

Happy #HealthCareAwarenessMonth!
We’re here to fight for accessible, affordable, and transparent #healthcare for the #chronicdisease community. Join us!

[Terry Wilcox @Terrilox]

Funny how $200 billion is collected in kickbacks and only about $30 billion of that is going to help patients lower costs in this bill. Shows how little anyone voting for this is actually serious about pro-patient drug pricing reform. #CongressionalMath

[Patients Rising @patientsrising]

Dir. of Patient Outreach @JPatientsrising represented Patients Rising at @colorofcci’s Equity in IBD symposium last week.

This event convened patients, physicians, & advocates to discuss how to advance #EquityInIBD. We’re ready to put what we’ve learned to work!

[Ru 🌸♿️ (she/they) 🎀 @RollWithRu]

i can be proud to be disabled whilst also acknowledging that life with disability is incredibly difficult. these two feelings can coexist.

[Lisa Ward @lisaward4senate]

To show support for @morethanmySLE (Peter Morley) and all his endless work for us in America, I would like us to all partner with him and ask anyone who sees this tweet to follow @healthcaremonth as August is #HealthCareAwarenessMonth. All solutions begin with awareness. Pls RT.

[Rheumatology Nurses @RNSociety]

It is Autoinflammatory Disease Awareness Month, a time to honor patients living with the disease & spread the word. Learn more and take part in promoting research & improved care for those with the disease at: https://t.co/VYpkfeLzKG #shine4autoinflammatory

[Rock the Vote @RockTheVote]

As we close out #DisabilityPrideMonth, we celebrate how the community continues to teach us how to accommodate others around us effectively! We should all push for a more inclusive and accessible future. #VOTE #CripTheVote

[Patients Rising @patientsrising]

Today we recognize the 32nd anniversary of the Americans with Disabilities Act, a monumental step forward to protect the rights of people with disabilities! #ADA32

[Anna Wolff, DO @annawolffdo]

You cannot wellness your way out of disability - stop telling disabled people to just take supplements/eat clean/do a special exercise regimen etc. I promise you - they already have heard it and are tired of it. #LongCovid #MECFS #hEDS

[Rock the Vote @RockTheVote]

Today is Americans with Disabilities Day!

32 years ago today, the ADA was signed into law. This landmark piece of legislation prohibited discrimination against individuals with disabilities in all areas of public life.

[SAMHSA @samhsagov]

Your mental health matters. Mental health is just as important as physical health. Good mental health helps you cope with stress and can improve your quality of life. Get tips and resources from NIMH to help take care of your mental health. https://t.co/rwe7gpU62G #shareNIMH

[Patients Rising @patientsrising]

Have you ever been denied coverage for a treatment or service?

ICER could be the reason why. We unpack how their decisions impact your insurer’s coverage determinations.

Take a look:

[Patient’s Right to Know 340B @340BPatients]

Advocates across the country are working to get the attention of those who have the power to change their lives. Michael Smith is doing just that, fighting for access to treatments that can transform the lives of patients with gastroparesis.

More here: https://t.co/sH3jrURukF

[Kate | Patient & Healthcare Advocacy @KateTheAdvocate]

How do you prefer to talk about disability?
#DisabilityPrideMonth