SDS Family Day Details

The Shwachman-Diamond Syndrome Registry (SDS Registry) is hosting the 2019 SDS Registry Conference, in Boston, MA. The Registry would like to share exciting new advances in their understanding of SDS made possible by the participation of everyone enrolled in the Registry. The SDS Registry welcomes you to this meeting to learn more about ongoing research, clinical trials, and treatments for SDS. 

ORGANIZERS:
Akiko Shimamura, MD, PhD and Kasiani Myers, MD

DATE:
Sunday, September 15, 2019.

VENUE:
Harvard Medical School Joseph B Martin Center
77 Avenue Louis Pasteur, NRB 133, Boston, MA, 02155

REGISTRATION:
Please register each member of your family (including children participating in free childcare activities) by August 4th
Participation in the meeting is FREE.
Registration link:   Event Registration Link

EVENT DETAIL:
This one-day meeting will share recent advances in SDS. In addition, this is an opportunity for patients and their families to meet and to participate in discussions with the Registry investigators and staff.
Children activities will also be available on-site, free of charge.

ACCOMMODATION:
The Inn at the Brookline
1200 Beacon St, Brookline, MA 02466
Promotional rate: $179.00 (Room rates do not include tax, currently at 11.7%)
Check-in: After 3pm Check out: 11 am
Your booking link is:  Shwachman Diamond Syndrome Family Day 2019
If you prefer to make reservations by phone, please contact The Inn at Brookline at 855-885-0368  with code “SDS”. We recommend that individuals call in advance to ensure accommodations, as this discounted rate is based upon availability, and if the Hotel is more than 85% sold-out, the discount will no longer be offered. *Free shuttle service will be provided between this hotel and Harvard Medical School Joseph B Martin Center.

SDSF is planning an evening event at the hotel – details to follow

FOR MORE INFORMATION:
Claudine Heleodoro Dwyer: [email protected] 
We look forwarding to seeing you in Boston on September 15th!


Affiliations

Shwachman-Diamond Syndrome Registry
Global Genese Rare Foundation Alliance
Genetic Alliance
NORD 2021 Platinum Member
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