Designating November 7 of each year as ''Shwachman Diamond Syndrome Awareness Day''.

119th Congress Introduced by Josh Gottheimer

Designates November 7 each year as Shwachman-Diamond Syndrome Awareness Day to boost public awareness, research support, and multidisciplinary care for SDS.

Submitted in House

1) Purpose and Intent

Designates November 7 of each year as “Shwachman Diamond Syndrome Awareness Day.”

Aims to increase public awareness of Shwachman-Diamond syndrome (SDS), a rare genetic disorder, and to promote awareness, research, and multidisciplinary care for affected individuals.

Acknowledges the need for better understanding, diagnosis, management, and treatment of SDS, as well as support for patients and families.

2) Key Provisions and Provisions of Change

Declares November 7, 2026 (and each subsequent year) as Shwachman-Diamond Syndrome Awareness Day.

Expresses support for increased awareness of SDS and its impact on residents of the United States.

Encourages continued or enhanced research into effective treatments and improved care for SDS patients.

Clarifies that the designation is symbolic and intended to bolster public education and philanthropy, research funding, and national/local awareness initiatives.

The resolution is non-binding and does not create new federal programs or authorize expenditures. It simply designates a day for awareness.

3) Who or What Would Be Affected

Individuals with Shwachman-Diamond syndrome and their families would be the primary beneficiaries through heightened awareness, potential improved diagnosis and care, and increased support.

Researchers, healthcare providers, patient advocacy groups, and policymakers, who may use the designation to organize awareness campaigns, fundraise, or advocate for SDS-related resources.

General public and healthcare community, which would gain increased knowledge about SDS, its symptoms (bone marrow dysfunction, pancreatic insufficiency, skeletal abnormalities, liver and dental issues, growth/developmental delays), and the importance of multidisciplinary care.

4) Procedural and Timeline Details

Date of designation: November 7 of each year, starting with November 7, 2026.

Legislative action: H.Res. 1133 was introduced March 24, 2026, and referred to the House Committee on Energy and Commerce. It is a House of Representatives resolution (non-binding) that designates a commemorative awareness day.

Implementation: Takes effect immediately upon enactment (per the text, “This act shall take effect immediately” for the designation).

5) Additional Context on Shwachman-Diamond Syndrome (SDS)

SDS is a rare autosomal recessive genetic disorder primarily affecting bone marrow, pancreas, and skeletal system.

Symptoms and impacts include bone marrow dysfunction (increased infection risk due to low white blood cells, potential anemia), pancreatic insufficiency (malabsorption, diarrhea, poor weight gain), skeletal abnormalities (short stature, orthopedic issues), liver dysfunction, dental problems, and developmental delays.

There is no cure; treatments focus on symptom management (pancreatic enzyme replacement, nutritional support, therapies to stimulate white blood cell production) and regular monitoring for progression to more serious conditions, such as bone marrow disorders.

Early diagnosis and multidisciplinary care can markedly improve quality of life, though the condition remains underdiagnosed due to variable presentation.

If you’d like, I can add a one-page briefing with a glossary of SDS terms and a short outline for potential awareness-raising activities tied to the designated day.

Bill