top of page
SDS Registry Family Day in Boston, MA, US
SDS Registry Family Day in Boston, MA, US

יום א׳, 15 בספט׳

|

Boston, MA

SDS Registry Family Day in Boston, MA, US

Celebrating the SDS Registry's 10th anniversary! Please join us for a complimentary day of education, connection, and fun! - Hear updates from the SDS Registry - Learn about exciting research - Discover cutting-edge clinical trials for SDS - Connect with other SDS families

Registration is Closed
See other events

זמן ומיקום

15 בספט׳ 2019, 8:00 – 16:00 GMT-4‎

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

פרטי האירוע

Registration is now closed. Hope to see many of you!

https://www.eventbrite.com/e/sds-family-day-2019-registration-60522599725?aff=affiliate1 

Celebrating the SDS Registry's 10th anniversary!

About this Event

Please join us for a complimentary day of education, connection, and fun!

- Hear updates from the SDS Registry

- Learn about exciting research

- Discover cutting-edge clinical trials for SDS

- Connect with other SDS families

Please individually register each family member attending this event by August 4th 2019 so we can plan for childcare and meals.

*Children's events will be available on-site*

 

Draft Event Program listed below.

8:30 AM – 9:30 AM – Registration & breakfast

9:30 AM – Welcome

10:00 AM – 11:45 AM – SDS Registry: Update, Talks and Discussion

11:45 AM – 12:45 PM - Lunch

12:45 PM – 3:00 PM – Talks and Discussion

3:00 PM – 3:15 PM – Break

3:15 PM – 5:00 PM – Family Event

Topics for presentation will include:

• Medical complications in children and adults

• Updates about bone Marrow transplant

• Gastrointestinal issues

• Strategies for leukemia surveillance

• Treatment of MDS and AML

• Gene therapy for SDS

• Living with SDS

שיתוף

1.png
Shwachman-Diamond Syndrome Alliance Inc.

Social:

Email: connect@SDSAlliance.org

Phone: +1-617-329-1838

Mail: PO Box 2441, Woburn, MA 01888

  • Facebook
  • YouTube
  • LinkedIn
  • X
  • Instagram
  • TikTok
  • RSS

The Shwachman-Diamond Syndrome Alliance (SDS Alliance) is a 501(c)(3) nonprofit organization dedicated to building a world where Shwachman-Diamond Syndrome (SDS) is a manageable condition and all patients and their families can thrive - through driving research and engaging in advocacy and education.

 

The SDS Alliance brings together patient families, researchers, clinicians, and other diverse stakeholders to better understand, diagnose, and treat this devastating cancer predisposition genetic disorder. The SDS Alliance was launched in 2020 by the parents of a child with SDS, who are biomedical researchers and entrepreneurs.

 

The SDS Alliance’s leadership and scientific & medical advisors are experienced clinicians and researchers focused on combining the patient-family perspective with solutions based on the best available scientific evidence.

 

Families from around the world are fundamental to accelerating the SDS Alliance’s mission to improve outcomes for all SDS patients, especially populations from diverse backgrounds who don’t have possible stem-cell donor matches. The SDS Alliance intentionally elevates the voices of individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the SDS Alliance’s mission.

image.png
7f860ba1d0495100af7e993752c35c859e84d603-400x300.png
GuideStar-Bronze-2021-300x300.png
Partners
rare-as-one.png
Milken Institute FasterCures.png
20210418 The40perrcent logo ROCKET - white background.png
2019-08_DG_GG_CE-foundation-alliance-logo_V1.png
odc-logo-color-hires.jpg
membership_badge_plat.webp
the-jackson-laboratory-vector-logo.png
NICER_logo.png
SDSR_PMS300-Black square.png
Combined Brain Logo-color-web.webp
bottom of page