3rd Annual COL4A1-A2

International ConferencE

may 15-16, 2026 |boston, usa!

We are pleased to announce that The Gould Syndrome Foundation, in partnership with Associazione Famiglie COL4A1-A2, will host the International Conference in the United States in spring 2026. This marks the first time the conference will be held in the U.S., offering community members a valuable opportunity to connect in person with other families, individuals affected by COL4A1-A2, and members of our Scientific and Medical Advisory Board.

Medical conferences are critical catalysts for advancing research and treatment in the rare disease community. For COL4A1-A2 disorders specifically, these gatherings consolidate expertise, accelerate scientific progress, and establish partnerships between researchers, clinicians, pharmaceutical companies, and patient advocacy organizations. The community-building aspect of conferences is instrumental in maintaining momentum toward therapeutic breakthroughs.

Location of Events

Day 1 – May 15

Patient Connect Day will be held at the Wyndham Boston Beacon Hill Hotel, 5 Blossom St, Boston, MA 02114.


Day 2 – May 16

All events will take place next door at Massachusetts General Hospital's (MGH) Simches Research Building, 185 Cambridge St, Boston, MA.

FAQ’s

  • May 15-16, 2026

  • Yes!

  • Patients (pediatric and adult), caregivers, providers, and researchers. We plan on offering childcare to help make family participation possible.


  • Our current fundraising goal is $35,000. Once we meet that goal, additional funds will be allocated for items like stipends and programming.


  • Fill out the conference survey to provide input on presentation topics. You can also volunteer, make a donation, fundraise, attend the conference, share conference news on social media, and invite your treating physicians to learn more about COL4A1/A2, etc.

  • Past Conferences 

    If you would like to learn about the past two conferences that were hosted in Italy, here are some resources:

LODGING INFORMATION

We recommend staying at the Wyndham Boston Beacon Hill, Boston, MA as our Patient Connect Day is held at the hotel on Friday,  and it is right next to the Simches Research Building, where Day 2 of the Conference will take place. The surrounding area offers convenient shops and services within walking distance, including grocery stores, pharmacies, and cafes. We have reserved a limited number of rooms at this hotel; please use the room reservation link so you may receive the special discounted rate for your stay. Please be advised that Boston will be quite popular in the spring, as the weather is welcoming and colleges and universities are graduating at this time. Hotel rooms are expected to sell out quickly.

Childcare rooms will  be available at the Wyndham Hotel on Friday 05/15/26; at MGH on Saturday 05/16/26 

Block Details:

  • Hotel: Wyndham Boston Beacon Hill

  • Dates: Thursday, May 14, 2026 – Sunday, May 17, 2026

  • Address: 5 Blossom Street, Boston, MA 02114, USA

  • Rate: $299 per night + tax for single, double, or ADA‑accessible rooms

  • Deadline to book at the discounted rate: April 10, 2026

Hotel block rate link coming Soon!

Help Us Reach Our Goal

We need your support to make this transformative gathering possible. Every donation brings us closer to our $35,000 goal and helps fund breakthrough research connections, specialist access, and community support that changes lives.

Donate now and double your impact: Check if your workplace provides donation matching to maximize your contribution.

Conference Questionnaire & Volunteering


We are planning our "Patient Connect Day" with panels, presentations and activities for Friday, May 15th, and a day of research-focused presentations by leading experts in COL4A1/A2 for patients and providers on Saturday, May 16th. 

We are excited to livestream this event AND will be taking questions from remote participants!  We will also have childcare available to assist in family participation. Planning is already underway, and we really need to hear from you as soon as possible.  Help us and respond so we can make this an exciting event for everyone!

Please click here to share your input on presentation topics and/or submit your information to help with volunteering. Volunteers are critical for fundraising, event planning, event set up and takedown, and more. Please reach out with any ideas to help make this conference a success!

It takes a village

Making this conference a reality will take the collective effort of our community, and we're here to support you every step of the way.

Whether you're interested in hosting a fundraiser, organizing an event, or rallying support, we've created resources to help you succeed, including Fundraising How-To's, Timeline & Budget outlines, and Guidelines. You'll also find inspiration from fellow Gould Syndrome parent Courtney Woods, who shares her fundraising journey and successes with us in the video below.

Ready to get started? We're with you all the way.

1:1 Fundraising
Fundraising Ideas
Example Fundraiser Outline

Select members of our SMAB speak to the Importance of the conference

  • Doug Gould

    “It is impossible to overstate the value and importance of the international gatherings of clinicians, scientists, and patients that have been initiated by Simona, Francesca and the Associazione Famiglie COL4A1-A2. There are tangible benefits to all stakeholders of this community. Patients and families learn more about the disease, scientists share unpublished data and coordinate their efforts, and clinicians  open lines of communication on how best to manage their patients. These elements are important for any disease and you can see examples of disease-focused meetings everywhere you look. But it is even more critical for a rare disease where the community is small and scattered across the globe and for a newly discovered disease for which so much remains unknown. Continuing and growing these international exchanges will be vital to identifying future treatments. We need everyone pulling on the same rope in whatever capacity they can.”

  • Dr. Rachel Vassar

    "The opportunity to meet with patients, researchers, and clinicians from around the world is the single most important driver of forward progress in COL4A1/2-related disorders."