Zebras Among Us: Advocating for the 30 Million Americans Living with Rare Disease

被引:0
|
作者
Eric L. Wan
Yehuda Elkaim
William Gao
Robin Yoon
机构
[1] Georgetown University School of Medicine,
[2] University of Pennsylvania Perelman School of Medicine,undefined
来源
Medical Science Educator | 2023年 / 33卷
关键词
Rare disease; Advocacy; Medical professionalism; Medical education; Health policy; Innovation;
D O I
暂无
中图分类号
学科分类号
摘要
Nearly 30 million (about 1 in 10) Americans have a rare disease. On average, rare disease patients wait 6 years for an accurate and definitive diagnosis and see as many as 12 specialists along their diagnostic journey. In this brief article, we highlight some of what is being done across patient care, medical education, policy, and innovation in order to improve the diagnostic and treatment journeys of rare disease patients. We hope that members of the medical education community will appreciate this call to action and engage in the rare disease space.
引用
收藏
页码:1239 / 1242
页数:3
相关论文
共 41 条
  • [31] Repeat Pregnancies Among US Women Living With HIV in the SMARTT Study: Temporal Changes in HIV Disease Status and Predictors of Preterm Birth
    O'Brien, Brigid E.
    Williams, Paige L.
    Huo, Yanling
    Kacanek, Deborah
    Chadwick, Ellen G.
    Powis, Kathleen M.
    Correia, Katharine
    Haddad, Lisa B.
    Yee, Lynn M.
    Chakhtoura, Nahida
    Dola, Chi
    Van Dyke, Russell B.
    JAIDS-JOURNAL OF ACQUIRED IMMUNE DEFICIENCY SYNDROMES, 2020, 85 (03) : 346 - 354
  • [32] Relationship between spending on electronic cigarettes, 30-day use, and disease symptoms among current adult cigarette smokers in the US
    Yao, Tingting
    Max, Wendy
    Sung, Hai-Yen
    Glantz, Stanton A.
    Goldberg, Rachel L.
    Wang, Julie B.
    Wang, Yingning
    Lightwood, James
    Cataldo, Janine
    PLOS ONE, 2017, 12 (11):
  • [33] Heart disease and cancer mortality by socioeconomic status among 232 million employed persons aged 35-64 from 1984-1997 in the US.
    Steenland, K
    Hu, SA
    Walker, JT
    AMERICAN JOURNAL OF EPIDEMIOLOGY, 2001, 153 (11) : S60 - S60
  • [34] Trends in Uncontrolled Hypertension, Coronary Heart Disease and Stroke Mortality, and Million Heart Events Among Us Adults From 1999-2014: Difference Between Age Groups
    Hong, Yuling
    Gillespie, Cathleen
    Ritchey, Matthew
    Fine, Lawrence
    Bowman, Barbara
    CIRCULATION, 2016, 134
  • [35] USE OF ELECTRONIC HEALTH RECORDS TO CHARACTERIZE A RARE DISEASE IN THE US: TREATMENT, COMORBIDITIES, AND FOLLOW-UP TRENDS AMONG PATIENTS WITH A CONFIRMED DIAGNOSIS OF ACROMEGALY
    Silverstein, Julie M.
    Roe, Erin D.
    Munir, Kashif M.
    Fox, Janet L.
    Emir, Birol
    Kouznetsova, Maria
    Lamerato, Lois E.
    King, Donna
    ENDOCRINE PRACTICE, 2018, 24 (06) : 517 - 526
  • [36] ASSESSING THE ECONOMIC BURDEN AND 30-DAY READMISSION RATES AMONG PATIENTS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE IN THE US VETERANS HEALTH ADMINISTRATION POPULATION
    Gupta, A.
    Lin, C.
    Wang, L.
    Yuce, H.
    Aygenc, G.
    Baser, O.
    VALUE IN HEALTH, 2018, 21 : S238 - S238
  • [37] Outcomes of Coronavirus Disease 2019 Infection Among Patients Living with Rheumatic Diseases: A Matched Cohort Study from a US Multi-Center Research Network
    D'Silva, Kristin
    Jorge, April
    Lu, Na
    Zhang, Yuqing
    Wallace, Zachary
    Choi, Hyon
    ARTHRITIS & RHEUMATOLOGY, 2020, 72
  • [38] Similar burden of type 2 diabetes among adult patients with sickle cell disease relative to African Americans in the US population: a six-year population-based cohort analysis
    Zhou, Jifang
    Han, Jin
    Nutescu, Edith A.
    Galanter, William L.
    Walton, Surrey M.
    Gordeuk, Victor R.
    Saraf, Santosh L.
    Calip, Gregory S.
    BRITISH JOURNAL OF HAEMATOLOGY, 2019, 185 (01) : 116 - 127
  • [39] NON-ALCOHOLIC FATTY LIVER DISEASE (NAFLD) AND ALCOHOLIC LIVER DISEASE (ALD) ARE THE MOST COMMON CAUSES OF 30-DAY HOSPITAL READMISSION AMONG PATIENTS WITH CHRONIC LIVER DISEASES (CLDS) IN THE UNITED STATES (US)
    Eberly, Katherine Elizabeth
    Kabbara, Khaled W.
    Harring, Michael
    Paik, James M.
    Verma, Manisha
    Younossi, Youssef
    Pham, Huong
    Henry, Linda
    Younossi, Zobair M.
    HEPATOLOGY, 2021, 74 : 397A - 398A
  • [40] Racial and Income Inequities in Cardiovascular Disease in Cancer versus Non-Cancer Patients: Propensity Score and Machine Learning Augmented Nationally Representative Case-Control Study of Mortality and Cost Among 30 Million Hospitalizations
    Monlezun, Dominique
    Agrawal, Nikhil
    Palaskas, Nicolas L.
    Cilingiroglu, Mehmet
    Marmagkiolis, Konstantinos
    Dhoble, Abhijeet
    Arain, Salman A.
    Iliescu, Cezar
    CIRCULATION, 2021, 144