Aaron Blocker

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Aaron Blocker Rare disease and IBD advocate since 2010, raising awareness, sharing resources, and empowering patients.

Living with Crohn’s and Hypophosphatasia, I work to educate, advocate, and support those navigating chronic illness.

30/10/2025

World Hypophosphatasia Day

It’s World Hypophosphatasia DayTo say this disease has had a major impact on my life would be an understatement. From ta...
30/10/2025

It’s World Hypophosphatasia Day

To say this disease has had a major impact on my life would be an understatement.

From taking 25 years to get a diagnosis (that I had to figure out), to having 29 orthopedic surgeries including 4 hip replacements.

This disease changed my career path and the way I saw the world.

It’s also shown me how resilient I and others can be in the face of something that seems so daunting and inconceivable.

I’m lucky to have the support system that I do. To have the resources I’ve had and been able to navigate a system that is already challenging for people who don’t have a rare disease.

I’m thankful my disease is one of the 5% of rare diseases that has a treatment that has altered the course of my disease.

But there’s still so much to be done for our community. More patients need access to treatment. And unfortunately some children still die from the severest forms of this disease.

That’s why today is so important. I hope you’ll join me in uplifting our community today and every day.

27/10/2025

Invisible Disability Week.

I recorded this last week and meant to post it but in true fashion I forgot.

Key takeaway: You don’t know what anyone is going through. Be mindful and empathetic to those around you.

Invisible Disabilities Week: Not all disabilities or illness are visible. It’s Invisible Disabilities Week and while som...
22/10/2025

Invisible Disabilities Week: Not all disabilities or illness are visible.

It’s Invisible Disabilities Week and while some disabilities are very visible others are not.

Those who don’t know me don’t know that I live with Crohn’s an an ultra rare bone disease called Hypophosphatasia.

They don’t see that I’ve had 28 surgeries, including 4 hip replacements or the doctors visits and infusions or injections I do to manage my diseases.

The photo of me in front of the research paper you wouldn’t know I was 6 weeks post op from my 3rd hip replacement and 2 weeks after that I was scheduled for my 4th hip replacement.

It’s important to be empathetic and show kindness to others because you just don’t know what people are going through.

14/10/2025

Inject my TREMFYA with me.

09/10/2025

Advocating on Capitol Hill.

Yesterday I was on the Hill in DC for work advocating for policies and legislation that help patients.It’s one of the co...
08/10/2025

Yesterday I was on the Hill in DC for work advocating for policies and legislation that help patients.

It’s one of the coolest parts of my job. I believe state and federal advocacy are some of the most important ways to help patients.

It’s also an easy way to advocate for yourself and others because you can call your legislators anytime and also write them to let them know the issue you are facing.

There’s a lot going on in healthcare policy right now so it’s important to make your voice heard.

Photo Dump:I’ve been traveling a lot lately for work and haven’t had a chance to post any photos. Been to Chicago, Sacra...
29/09/2025

Photo Dump:

I’ve been traveling a lot lately for work and haven’t had a chance to post any photos.

Been to Chicago, Sacramento and San Francisco. Advocating for the bleeding disorders community.

My First TREMFYA Injection:Last night I did my first injection of TREMFYA. Now that I have completed my loading dose inf...
07/09/2025

My First TREMFYA Injection:

Last night I did my first injection of TREMFYA. Now that I have completed my loading dose infusions, I move to the maintenance phase which is one injection a month.

Overall it was a really easy injection. The injector is a “push touch” pen where there is no button, you just press it down into your skin and it starts to inject.

Had some minor injection pain but was not bad.

I will post a video of the injection experience and show off the pen but very pleased with how easy it was.

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