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Main > Advocacy > NORD (National Organization for Race Disorders)
NORD (National Organization for Race Disorders)
| Address: |
55 Kenosia Ave
DANBURY, CT. 06813 |
| Hours of Operation: |
mon - fri 9:00 am - 5:00 pm |
| Phone: |
(800) 999-6673 |
| Website: |
http://www.rarediseases.org/ |
| Languages Spoken: |
english |
INFORMATION:
On NORD's web site, and through it's publications, it provides information about rare diseases (including less common forms of cancer) and support organizations. Patients and family members may communicate by phone, letter, or email with NORD's registered nurse and genetic counselor. If callers have questions related to providing care or accessing services for someone with a rare disease, they can send email inquiries to:
RN@rarediseases.org. If they have questions related to genetic testing or the inheritance patterns of diseases, they can send email inquiries to: genetic_counselor@rarediseases.org
NETWORKING:
NORD's Networking Program puts families with the same diagnosis in touch with each other. This helps people find mutual support and encourages the formation of new support groups for specific rare diseases.
PATIENT SERVICES:
NORD provides other assistance to families, such as helping patients find free or low-cost travel options to distant treatment centers and answering questions related to insurance, Medicare, disability rights, and other issues.
MEDICATION ASSISTANCE:
NORD administers several Medication Assistance Programs that provide more than 20 different medications to uninsured and underinsured people who could not otherwise afford them. NORD also administers programs for specific experimental therapies. This is done through arrangements with humanitarian-minded pharmaceutical firms.
RARE DISEASES DATABASE (RDB):
This database (on their website) has understandable reports written for patients and families on approximately 1,140 rare diseases, with referrals to support groups and other resources.
ORGANIZATIONAL DATABASE (ODB):
This database includes information on more than 2,000 organizations and government agencies that help rare-disease patients and families.
Program Fees
Fees for information (disease reports) - 1st report is free, any additional report is $7.50.
Eligibility
There is eligibility criteria for the Medication Assistance programs. Please call for more information.
Accessibility
Office is accessible via public transportation. |
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