Patient advocacy organizations can be essential supporting partners for patients, their families and caregivers.
The following organizations offer resources and information to help navigate the complex therapeutic landscape:
Hemophilia
North America
The Coalition for Hemophilia B
825 3rd Ave #2
New York, NY 10022
(212) 520-8272
http://hemob.org/
Hemophilia Federation of America
820 First St NE #720
Washington, DC 20002
(202) 675-6984
http://hemophiliafed.org/
National Hemophilia Foundation
7 Penn Plaza Suite 1204
New York, NY 10001
(212) 328-3700
https://www.hemophilia.org/
LA Kelley Communications
http://www.kelleycom.com/
EU
European Haemophilia Consortium
http://www.ehc.eu/
International
Save One Life
http://www.saveonelife.net/
World Federation of Hemophilia
Montreal, Canada
http://www.wfh.org/en/page.aspx?pid=492
Huntington's Disease
Huntington's Disease Society of America
505 Eighth Avenue / Suite 902
New York, NY 10018
800-345-HDSA
https://hdsa.org/
European Huntington Association
Vognsneset 30
4643 Søgne
Norway
http://eurohuntington.org/
Rare Disease Organizations
US
Global Genes
https://globalgenes.org/
EveryLife Foundation
http://everylifefoundation.org/
Rare Disease Legislative Advocates
http://rareadvocates.org/
National Organization for Rare Disorders
https://rarediseases.org/
Genetic Alliance
http://www.geneticalliance.org/
Rare Disease United Foundation
http://rarediseaseunited.org/
EU
EURORDIS
http://www.eurordis.org/
Genetic Disorders UK
http://www.geneticdisordersuk.org/