What are the opening hours?

Monday 9am - 5pm Tuesday 9am - 5pm Wednesday 9am - 5pm Thursday 9am - 5pm Friday 9am - 5pm Saturday 11am - 3pm Sunday 11am - 4pm

HPS Network

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The HPS Network is a 501c3 non-profit serving families with Hermansky-Pudlak Syndrome and other albinism-related syndromes.

Our page is designed to provide news to our community.

10/15/2026

Happy White Cane Safety Day!

Some people in our community find the white cane to be a helpful tool in their lives.

White Cane Safety Day is a national observance in the United States, celebrated on October 15 of each year since 1964. The date is set aside to celebrate the achievements of people who are blind or visually impaired and the important symbol of blindness and tool of independence, the white cane.

10/14/2026

Looking for funding for your trip to conference? Try reaching out to civic organizations (such as the Lions Club or Rotary Club).

There is a sample letter you can use on the conference page on our website. https://www.hpsnetwork.org/conferences/

10/13/2026

We love hearing from our community members about what the conference means to them and why they continue to attend it year after year.

Conference 2027 registration is open! Will we see you there? https://www.hpsnetwork.org/conferences/

10/12/2026

October is Blindness Awareness Month

Hermansky-Pudlak Syndrome impairs vision to varying degrees and some are considered legally blind.

Blindness Awareness Month is observed every October to raise awareness about blindness and vision impairment, celebrate the achievements of the blind and visually impaired community, and promote eye health.

You can help spread awareness by sharing your story!

10/01/2026

Question Thursday time!!!

What is your favorite fall activity?

Let us know! 💕

09/29/2026

Amber’s AMC fundraiser starts tomorrow! Check it out!

Thank you again to our amazing community for hosting these fundraisers throughout the year!

09/28/2026

Ashley and Donna spoke at Columbia Medical School last week!

Teaching the next generation about Chocolate Chip cookies, Thank you to Columbia Medical school for inviting us!

09/25/2026

Happy World Lung Day! 🫁

World Lung Day is an annual global health campaign observed on September 25th to raise awareness about lung health and advocate for the reduction of respiratory diseases.

09/24/2026

Once again, Amber wins the award for being the very first person to register for the 2027 HPS Conference! She was the first last year as well!

We hope she inspires you to do the same! Register at www.hpsnetwork.org/conferences/

09/23/2026

The possibility of new HPS research and future clinical trials is growing-and we need you to help make sure our community is ready. 🫁

If you are over 18 years old and have HPS types 1 or 4, we need YOU! Send us your most recent pulmonary function test (PFT) results (within the last 2 years). This information will be deidentified and used to make informed decisions about our community for a research trial.

Please send your PFT to [email protected]. You can find your PFTs in your patient portal online or ask your doctor.

No trial is possible without data and we need yours!

If anyone has any questions about this request, please reach out.

Address

1 South Road
Oyster Bay, NY
11771

Opening Hours

Monday	9am - 5pm
Tuesday	9am - 5pm
Wednesday	9am - 5pm
Thursday	9am - 5pm
Friday	9am - 5pm
Saturday	11am - 3pm
Sunday	11am - 4pm

Telephone

+18007899477

Website

http://www.hpsnetwork.org/, https://linktr.ee/hpsnetworkinc

Alerts

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