Patients:

Community Resources

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/