HPS Network

09/02/2026

Happy World Oxygen Day!

World Oxygen Day is held on October 2nd to raise awareness about the critical need for oxygen therapy, highlight challenges in accessing it, and promote advancements in oxygen equipment and infrastructure.

Many HPSers are either on oxygen or will need oxygen at some point in their lives. It’s very important that we raise awareness. Share your story and advocate for policy to get involved!

08/28/2026

Having a rare disease can feel isolating… finding a community can change everything!

We are stronger together! ❤️

08/28/2026

Question Thursday ❓❓❓

What’s one thing that instantly makes your day better?

08/26/2026

🐾 Happy National Dog Day!

Many members of our community have pet dogs but some members have guide dogs!
These incredible partners help make navigating the world easier by giving independence and confidence for those with low vision.

Do you have a pet dog or guide dog? Tell us about them!

08/24/2026

Both HPSers AND parents alike can help us with research. Learn more about how you can help us with the AID.

Link in bio!
Aid.iamrare.org

08/21/2026

08/20/2026

Question Thursday!

What advice would you give to a kid with HPS at the start of the school year?

We’d love to hear it ❤️

08/17/2026

Today is national Nonprofit Day!

National Nonprofit Day is observed annually on August 17 to recognize the positive impact of charitable organizations, volunteers, and staff. The date commemorates the passage of the Tariff Act of 1894, which first granted federal income tax exemptions to charitable institutions.

08/14/2026

What’s your favorite sunscreen brand? Don’t forget to protect your skin!

08/12/2026

Here are some tips to protect your lung wellness from Joelle

- If you need to be outdoors while the air quality is poor from wildfire smoke, wear a KN95 or KF94 (N95 is the gold standard, but hard to breathe in). Surgical and cloth masks don’t provide adequate protection against the tiny particles found in wildfire smoke.

- A few other tips that you probably are already doing!
• Keep windows and doors closed.
• Run central AC on recirculate if possible.
• Use a HEPA air purifier in the room where you spend the most time.
• Avoid strenuous outdoor exercise.
• Check local air quality (AQI) before going outside.
• Keep rescue inhalers readily available if prescribed.
• Seek medical care promptly if symptoms worsen (increasing shortness of breath, wheezing, chest pain, or oxygen levels lower than usual).
Stay safe,
Joelle