NEW! Adult Sibling Meet Up
2024-04-13 16:00 - 17:00 UTC | Virtual
Adult siblings, please join us Saturday, April 13 (NEW DATE) from 4:00-5:00 pm UTC+0 (UK time) for our first sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
We are beginning to offer PURA Sibling meet ups, beginning with our adult sibling population. Younger age group meet ups will follow, please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

2024 PURA Syndrome Conference
2024-06-21 16:00 - 2024-06-23 13:00 (America/Chicago)
For more information, go to www.puraconference.org

Together for PURA Kickoff Meeting 1
2024-07-17 10:30 - 11:30 (America/New_York) | Virtual
Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as well as serve and empower families impacted by PURA Syndrome? WE can do this, and you can help! Many of you have indicated that you would like to host an event or do “something” to raise money. If we all do “something,” big or small, we will reach our goal!
On Wednesday, July 17, we will offer a two special zoom sessions hosted by board members Nancy Boccia and Melissa Vaught, on Everything You Need to Know to Plan a PURA Perfect Fundraiser. No fundraiser is too small and you can all be part of this. Our goal is to have 100+ teams…imagine what we can do!
Click here to register for the July 17, 10:30 am ET session
If you have any questions or are unable to attend and would like more information, please contact n.boccia@pura-syndrome.org. Hope to see you all there and get your ideas and questions ready!

Together for PURA Kickoff Meeting 2
2024-07-17 19:00 - 20:00 (America/New_York) | Virtual
Wouldn’t it be amazing if PURA families got together to raise awareness in our communities and invite others to join us in our mission to support and drive research, as well as serve and empower families impacted by PURA Syndrome? WE can do this, and you can help! Many of you have indicated that you would like to host an event or do “something” to raise money. If we all do “something,” big or small, we will reach our goal!
On Wednesday, July 17, we will offer a two special zoom sessions hosted by board members Nancy Boccia and Melissa Vaught, on Everything You Need to Know to Plan a PURA Perfect Fundraiser. No fundraiser is too small and you can all be part of this. Our goal is to have 100+ teams…imagine what we can do!
Click here to register for the July 17, 7:00 pm ET session
If you have any questions or are unable to attend and would like more information, please contact n.boccia@pura-syndrome.org. Hope to see you all there and get your ideas and questions ready!

South Bend Cubs Game to Benefit the PURA Foundation
2024-08-08 19:00 - 22:00 (America/New_York) | Four Winds Field, South Bend, IN, 46601, United States
Come out to Four Winds Field in South Bend, IN on August 8th to raise awareness for the PURA Syndrome Foundation! Every ticket purchased donates $3 back to the PURA Syndrome Foundation.

Buy Tickets here to attend the game
Donate to Teresa’s fundraiser here to support PURA
Hosted by PURA Mom, Teresa Hayden

Lemonade Stand for PURA
2024-08-17 11:00 - 15:00 (America/New_York) | Belsan Bait & Tackle, 4 Brook St, Scituate, MA, 02066, United States
Join us for our Together for PURA Lemonade Stand at Belsan Bait & Tackle on August 17, 2024 from 11 am – 3:00 pm in Scituate, MA.
Buy a “virtual” glass of lemonade here to support PURA.

Hosted by Vivienne Conrad and her grandmother, Nancy Boccia

Adult Sibling Meet Up - September 2024
2024-09-29 16:00 - 17:00 UTC | Virtual
Adult siblings, please join us Sunday, September 29 from 4:00-5:00 pm UTC+0 (UK time) for an adult (ages 18+) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Germany Meet Up October 2024
2024-10-03 19:30 - 20:30 (Europe/Helsinki) | Virtual

Young Adult Sibling Meet Up - October 2024
2024-10-06 16:00 - 17:00 UTC | Virtual
Young adult siblings, please join us Sunday, October 6 from 4:00-5:00 pm UTC+0 (UK time) for our first young adult (ages 13-17) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Pre-Teen Sibling Meet Up - October 2024
2024-10-13 16:00 - 17:00 UTC | Virtual
Pre-teen siblings, please join us Sunday, October 13 from 4:00-5:00 pm UTC+0 (UK time) for our first pre-teen (ages 9-12) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Italy Meet-Up October 2024
2024-10-24 21:00 - 22:00 (Europe/Rome)

All are Welcome Meet-Up October 2024
2024-10-27 15:00 - 16:00 (America/New_York) | Virtual
All are welcome for a meet-up of any families that can join us!

Registry Meet-Up #1: November 2
2024-11-02 11:00 - 12:00 (America/New_York) | Virtual
This meet-up has been scheduled to help families fill in the Global Patient Registry. Please be sure to visit our webpage at purasyndrome.org/registry to ensure your account is set-up prior to the meeting. On that same page is a checklist of items that would be helpful to have gathered prior to the meeting as well.

Young Sibling Meet Up - November 2024
2024-11-03 16:00 - 17:00 UTC | Virtual
Young siblings, please join us Sunday, November 3 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Registry Meet-Up #2: November 17
2024-11-17 19:00 - 20:00 (America/New_York) | Virtual

Adult Sibling Meet Up - February 2025
2025-02-08 16:00 - 17:00 UTC | Virtual
Adult siblings, please join us Saturday, February 8 from 4:00-5:00 pm UTC+0 (UK time) for an adult (ages 18+) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Young Adult Sibling Meet Up - February 2025
2025-02-09 16:00 - 17:00 UTC | Virtual
Young adult siblings, please join us Sunday, February 9 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Pre-Teen Sibling Meet Up - February 2025
2025-02-22 16:00 - 17:00 UTC | Virtual
Pre-teen siblings, please join us Saturday, February 22 from 4:00-5:00 pm UTC+0 (UK time) for a pre-teen (ages 9-12) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Young Sibling Meet Up - February 2025
2025-02-23 16:00 - 17:00 UTC | Virtual
Young siblings, please join us Sunday, February 23 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

2025 PURA Syndrome Conference
2025-06-27 17:00 - 2025-06-29 12:00 (America/New_York) | Embassy Suites by Hilton Grapevine, 2401 Bass Pro Drive, Grapevine, TX, 76051, United States

Adult Sibling Meet Up - September 2025
2025-09-06 16:00 - 17:00 UTC | Virtual
Adult siblings, please join us Saturday, September 6 from 4:00-5:00 pm UTC+0 (UK time) for an adult (ages 18+) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Young Adult Sibling Meet Up - September 2025
2025-09-07 16:00 - 17:00 UTC | Virtual
Young adult siblings, please join us Sunday, September 7 from 4:00-5:00 pm UTC+0 (UK time) for a young adult (ages 13-17) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Pre-Teen Sibling Meet Up - September 2025
2025-09-13 16:00 - 17:00 UTC | Virtual
Pre-teen siblings, please join us Saturday, September 13 from 4:00-5:00 pm UTC+0 (UK time) for a pre-teen (ages 9-12) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

Young Sibling Meet Up - September 2025
2025-09-14 16:00 - 17:00 UTC | Virtual
Young siblings, please join us Sunday, September 14 from 4:00-5:00 pm UTC+0 (UK time) for our first young (ages 4-8) sibling meet up! If you haven’t yet signed up for our sibling email list, please click here. For more sibling information and resources, click here.
Questions? Contact our Sibling Ambassador Chrissie Brock at siblings@pura-syndrome.org
Please continue to check back as we will be periodically adding more resources and regular meet ups to the calendar on our Siblings Outreach page.

First Grandpops Meet-up
2025-09-27 13:00 - 14:00 (America/New_York) | Virtual
Join us for our first Grandpops Meet-up! Check out our website at purasyndrome.org/grandpops and sign up for our email list here.

All are Welcome Meet-Up October 2025
2025-10-11 15:00 - 16:00 (America/New_York) | Virtual
All are welcome for a meet-up of any families that can join us! Questions? Contact Melissa at m.vaught@pura-syndrome.org

Grandpops Meet-up - February 2026
2026-02-28 13:00 - 14:00 (America/Chicago) | Virtual
PURA Grandparents mark your calendars! On February 28 at 1 pm CST, we will host a virtual GrandPOPS Meetup. Join us on Zoom to share our stories, photos, joys, and concerns. If your special grandchild is available, we would love to them, but we welcome photos too. Sign-up for our GrandPops email list here. Questions? Email grandpops@pura-syndrome.org.

First Meet Up for PURA Families in India
2026-03-01 09:00 - 10:00 (Asia/Kolkata) | Virtual
The PSF will be hosting a virtual meet-up for any of our families from India on Sunday, March 1, at 9:00 am IST. If you would like to join this meet-up please be sure to register here.

2026 PURA Syndrome Conference
2026-06-26 17:00 - 2026-06-28 12:00 (Europe/Helsinki) | Holiday Inn Munich – City Centre, Holiday Inn Munich - City Centre Hochstraße 3,, Munich, 81669, Germany
