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ECD Patient Locations
The following lists represent the number of patients currently registered with the ECD Global Alliance; to date, there have been a total of 900 patients registered with the organization. We believe there are other patients in the world that are either not yet diagnosed or may not be aware of the ECDGA and therefore have not registered. We encourage all diagnosed ECD patients to register with the organization here at no cost. For those searching for a diagnosis, please contact us. We are happy to help you connect with physicians who can aid in a correct diagnosis.
| Registered Location | # Patients |
| Algeria | 1 |
| Antarctica | 1 |
| Argentina | 6 |
| Aruba | 1 |
| Australia | 38 |
| Austria | 1 |
| Azerbaijan | 1 |
| Bahrain | 1 |
| Belgium | 7 |
| Brazil | 40 |
| Bulgaria | 3 |
| Canada | 37 |
| Chile | 6 |
| China | 15 |
| Colombia | 4 |
| Cuba | 1 |
| Cyprus | 1 |
| Denmark | 2 |
| Egypt | 2 |
| France | 42 |
| Georgia | 1 |
| Germany | 26 |
| Greece | 3 |
| Hungary | 2 |
| India | 7 |
| Iran (Islamic Republic of) | 3 |
| Iraq | 1 |
| Ireland | 2 |
| Israel | 15 |
| Italy | 28 |
| Japan | 2 |
| Kazakhstan | 2 |
| Korea, Republic of | 1 |
| Kyrgyzstan | 1 |
| Lebanon | 1 |
| Libya | 1 |
| Mexico | 8 |
| Moldova, Republic of | 1 |
| Morocco | 1 |
| Namibia | 1 |
| Nepal | 3 |
| Netherlands | 11 |
| New Zealand | 7 |
| North Macedonia | 1 |
| Norway | 6 |
| Pakistan | 3 |
| Panama | 1 |
| Paraguay | 1 |
| Peru | 2 |
| Philippines | 2 |
| Poland | 2 |
| Portugal | 4 |
| Romania | 4 |
| Russian Federation | 3 |
| Saudi Arabia | 3 |
| Singapore | 1 |
| Slovenia | 1 |
| South Africa | 2 |
| Spain | 22 |
| Sweden | 3 |
| Switzerland | 5 |
| Thailand | 1 |
| Trinidad and Tobago | 1 |
| Tunisia | 1 |
| Turkey | 10 |
| Turkmenistan | 1 |
| Ukraine | 2 |
| United Arab Emirates | 2 |
| United Kingdom of Great Britain and Northern Ireland | 51 |
| United States of America | 425 |
| Uruguay | 2 |
| Total | 900 |
| Male | 61% |
| Female | 39% |
| Registered US State/Territory Location | # Patients |
| Alabama | 4 |
| Alaska | 1 |
| Arizona | 9 |
| California | 60 |
| Colorado | 13 |
| Connecticut | 5 |
| Delaware | 2 |
| District of Columbia | 3 |
| Florida | 27 |
| Georgia | 12 |
| Hawaii | 3 |
| Idaho | 2 |
| Illinois | 16 |
| Indiana | 10 |
| Iowa | 9 |
| Kansas | 2 |
| Kentucky | 8 |
| Louisiana | 2 |
| Maine | 5 |
| Maryland | 9 |
| Massachusetts | 7 |
| Michigan | 18 |
| Minnesota | 9 |
| Mississippi | 3 |
| Missouri | 13 |
| Nebraska | 3 |
| Nevada | 2 |
| New Hampshire | 2 |
| New Jersey | 10 |
| New Mexico | 1 |
| New York | 23 |
| North Carolina | 6 |
| North Dakota | 1 |
| Ohio | 16 |
| Oklahoma | 2 |
| Oregon | 4 |
| Pennsylvania | 22 |
| South Carolina | 4 |
| South Dakota | 3 |
| Tennessee | 7 |
| Texas | 15 |
| Vermont | 2 |
| Virginia | 13 |
| Washington | 17 |
| West Virginia | 1 |
| Wisconsin | 7 |
| Wyoming | 1 |
| Puerto Rico | 3 |
| Unknown State | 8 |
| Total | 425 |
Last updated: August 23, 2023
