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
  • [21] Diet, Physical Activity, and Cardiovascular Disease Risk Factors Among Older Chinese Americans Living in New York City
    Sally S. Wong
    L. Beth Dixon
    Judith A. Gilbride
    Warren W. Chin
    Tak W. Kwan
    Journal of Community Health, 2011, 36 : 446 - 455
  • [22] Weeding through the haze: a survey on cannabis use among people living with Parkinson's disease in the US
    Feeney, Megan P.
    Bega, Danny
    Kluger, Benzi M.
    Stoessl, A. Jon
    Evers, Christiana M.
    De Leon, Rebeca
    Beck, James C.
    NPJ PARKINSONS DISEASE, 2021, 7 (01)
  • [23] Weeding through the haze: a survey on cannabis use among people living with Parkinson’s disease in the US
    Megan P. Feeney
    Danny Bega
    Benzi M. Kluger
    A. Jon Stoessl
    Christiana M. Evers
    Rebeca De Leon
    James C. Beck
    npj Parkinson's Disease, 7
  • [24] Natural History of Coronavirus Disease 2019: Risk Factors for Hospitalizations and Deaths Among >26 Million US Medicare Beneficiaries
    Izurieta, Hector S.
    Graham, David J.
    Jiao, Yixin
    Hu, Mao
    Lu, Yun
    Wu, Yue
    Chillarige, Yoganand
    Wernecke, Michael
    Menis, Mikhail
    Pratt, Douglas
    Kelman, Jeffrey
    Forshee, Richard
    JOURNAL OF INFECTIOUS DISEASES, 2021, 223 (06): : 945 - 956
  • [25] Two decade trends in cardiovascular disease outcomes and cardiovascular risk factors among US veterans living with HIV
    Haji, Mohammed
    Lopes, Vrishali V.
    Ge, Augustus
    Halladay, Christopher
    Soares, Cullen
    Shah, Nishant R.
    Longenecker, Christopher T.
    Lally, Michelle
    Bloomfield, Gerald S.
    Shireman, Theresa, I
    Ross, David
    Sullivan, Jennifer L.
    Rudolph, James L.
    Wu, Wen-Chih
    Erqou, Sebhat
    INTERNATIONAL JOURNAL OF CARDIOLOGY CARDIOVASCULAR RISK AND PREVENTION, 2022, 15
  • [26] Hospitalization and Living Donor Kidney Transplantation Among Waitlisted End Stage Renal Disease Patients in the US.
    Newman, K.
    Adams, A.
    Pastan, S.
    Lynch, R.
    Zhang, R.
    Patzer, R.
    AMERICAN JOURNAL OF TRANSPLANTATION, 2016, 16 : 447 - 447
  • [27] Physical Activity and Cause-Specific Cardiovascular Mortality Among People With and Without Cardiovascular Disease: A Cohort Study of 0.6 Million US Adults
    Cabanas-Sanchez, Veronica
    Duarte, Miguel Angelo
    Lavie, Carl J.
    Celis-Morales, Carlos
    Rodriguez-Artalejo, Fernando
    Martinez-Gomez, David
    MAYO CLINIC PROCEEDINGS, 2024, 99 (04) : 564 - 577
  • [28] Understanding the relationship between trust in health care and attitudes toward living donor transplant among African Americans with end-stage renal disease
    McDonald, Evangeline L.
    Powell, C. Lamonte
    Perryman, Jennie P.
    Thompson, Nancy J.
    Arriola, Kimberly R. Jacob
    CLINICAL TRANSPLANTATION, 2013, 27 (04) : 619 - 626
  • [29] Moon, Mars and Minds: Evaluating Parkinson's disease mortality among US radiation workers and veterans in the million person study of low-dose effects
    Dauer, Lawrence T.
    Walsh, Linda
    Mumma, Michael T.
    Cohen, Sarah S.
    Golden, Ashley P.
    Howard, Sara C.
    Roemer, Grace E.
    Boice Jr, John D.
    ZEITSCHRIFT FUR MEDIZINISCHE PHYSIK, 2024, 34 (01): : 100 - 110
  • [30] Attitudes Toward Personal Health Data Sharing Among People Living With Sickle Cell Disorder, Exemplar for Study of Rare Disease Populations
    Baines, Rebecca
    Stevens, Sebastian
    Garba-Sani, Zainab
    Chatterjee, Arunangsu
    Austin, Daniela
    Leigh, Simon
    JOURNAL OF PATIENT-CENTERED RESEARCH AND REVIEWS, 2023, 10 (02) : 68 - 76