Mark your calendars to join us monthly for our virtual events! The information on all upcoming meetings can be found on our virtual events page. Links to all events are included in our member emails. If you aren't receiving them or want to become a member, please...
Events - Articles
2022 Mother’s Workshop
Mothers!! Join us for our annual Mothers' Workshop with Sheila Adamo, LCSW, CADC Sunday, April 3rd, from 5pm to 8pm ET Registration is required for this event: LINK TO REGISTRATION FORM
Join Us on June 10, 2022
Mark your calendars to join us and make HPS history advocating for future treatments. The HPS Network will host an Externally-Led Patient Focused Drug Development meeting on June 10, 2022. This meeting will be open to the public, with speakers and attendees attending...
Giving Tuesday, November 30, 2021
An event NOT to be missed! Whether it's doing an act of kindness, speaking out for a cause that matters to you, or donating to a favorite nonprofit, every act of generosity counts and each means more when we give together...this is the spirit of Giving Tuesday. Stay...
Virtual Christmas Concert, December 4, 2021 at 7:30pm ET
We Saved the Best for Last and You're Invited! The 20th Anniversary HPS Benefit Christmas Concert will take place virtually again this year. Minimum donation for the concert link is $50. Send in your donation to the network with a note that you would like to attend...
Halloween Bash on Zoom, October 27, 2021 at 8pm ET
Please join us in costume on Zoom for a Halloween Bash! Wednesday, October 27th at 8pm ET Members, check your email for the link to the event, or email us at events@hpsnetwork.org for details.
HPS Network Participating in the Million Dollar Bike Race
The Penn Medicine Orphan Disease Center (ODC) will host the 8th Annual Million Dollar Bike Ride on Saturday, June 12, 2021 to raise money for rare disease research. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either...
International Albinism Awareness Day is Sunday, June 13, 2021
International Albinism Awareness Day (IAAD) is on Sunday, June 13, 2021. This year’s theme and hashtag is #StrengthBeyondAllOdds. On this day, we would like to showcase how resilient and powerful those with albinism are. It is a day to share our voice, show our...
HPS Awareness Day April 6, 2021
Tuesday, April 6th is HPS Awareness Day! Starting in 2019, the HPS Network designated April 6th as HPS Awareness Day. Why April 6th? That is the HPS Network’s birthday, as we were incorporated as a 501c3 on. April 6, 1995. What is HPS Awareness Day? It is our one...
February 28 is Rare Disease Day!
The HPS Network celebrated Rare Disease Day 2021 by hosting a rare disease trivia on Gatherly. Thanks to our graduate student interns who helped curate the facts used for the event! Our membership was asked to spread awareness by sharing their stories on social media....
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