Champion our cause
SMA Syndrome Advocacy
Because this is a rare condition, it can be easily misdiagnosed. Diagnosis is usually achieved only after doctors have excluded all other potential causes. This means that patients sometimes have to suffer through years of gastrointestinal evaluation. Through SMA Syndrome advocacy, we can raise awareness of this condition, shortening this time to diagnosis.
Advocate for digestive health through the International Foundation for Gastrointestinal Disorders.
“Public awareness is critical to advance research and improve care for people affected by FGIMDs. The more we spread the word and talk openly about these conditions, the greater our ability to make connections with people who can benefit from our support and raise the funds needed to provide it.
“A higher profile can translate into larger federal investments in research activities and a stronger commitment from industry to develop new treatment options. By speaking out with us, you can have an impact on improving the quality of life for those suffering with digestive diseases.”
Join the National Organization for Rare Disorder’s RareAction Network.
“The RareAction Network® (RAN) is the nation’s leading advocacy network working to improve the lives of the 30 million Americans living with a rare disease at the state level. RAN serves as a broad spectrum of stakeholders ranging from patients, to their families, caregivers, and friends; from researchers to industry; to physicians and academia. While working predominantly at the state level, the network will filter information up to NORD’s national federal policy team to help address issues of national concern.”
Clinical Trials
If you think you may have Superior Mesenteric Artery Syndrome, read through What is SMA Syndrome?
Visit the U.S. National Library of Medicine Clinical trials site to sign up for a clinical trial. The results of trials increase understanding and improve the treatment of this rare condition.
Supporting a loved one who has been diagnosed with SMA Syndrome
The American Psychological Association provides guidance for how to help a friend or loved one suffering from a chronic illness.
Ask your loved ones how they’d like to become involved in SMA Syndrome Advocacy.
