NORD Patient Family Conference 2000

[Guest guest]

http://www.rarediseases.org/events/pat_00.htm

NORD Patient Family Conference 2000

Meet NORD in St. Louis October 13-15, 2000

With more than 6,000 rare diseases affecting over 25 million Americans,

NORD convenes a conference each year that focuses on the shared

experiences of those coping with rare diseases. The NORD Conference

2000: Gateway to Hope at the Renaissance Hotel in St. Louis, Mo., will

enable attendees to explore resources, learn from experts, and network

with other individuals who understand their needs and concerns.

Working in conjunction with the NIH Office of Rare Diseases, NORD will

provide a program of general sessions this year that will include the

following topics:

· Bringing an Orphan Drug to Market (presented by the FDA Office

of Orphan Products and Orphan Medical, a small pharmaceutical company

that specializes in development of orphan drugs)

· Stress and Chronic Disease

· Insurance Reimbursement and Medicare/Medicaid Issues

· Ask the Doctors Panel

· Resource opportunities (presented by the NIH Office of Rare

Diseases and the National Disease Research Interchange or NDRI)

Two-Track Series of Workshops

In addition to the general sessions, there will be a two-track series of

workshops: One track will address the needs of patients, families, and

professionals. The second track will provide training and information to

leaders of voluntary health agencies and support groups.

Track One attendees will be able to choose from workshop topics that

will include: Special Education for Children with Disabilities, Dental

Issues, Caregiving, Financial Planning, Centers of Excellence for

Research, and Genetic Counseling. Medical workshops have been planned

to discuss current studies on neurologic disorders, metabolic disorders,

and rare cancers, along with a special session dealing with undiagnosed

conditions.

Track Two workshops will focus on topics of interest to representatives

of voluntary health agencies. A day-long meeting on Friday, Oct. 13,

will address non-profit fundraising, with mini sessions on Direct Mail,

Planned Giving, and Federated Campaigns. Additional sessions on

Conference Planning, Legal Issues for Non-Profits, Board Development,

and Research Grant Programs will be held on Saturday, Oct. 14.

Special Events

Special arrangements have been made for a " conference within a

conference " for the Hereditary Angioedema (HAE) and Familial Adenomatous

Polyposis (FAP) communities. Each group will be offering specifically

designed workshops on topics of particular importance to them.

The two-and-a-half-day conference will be launched on Thursday evening,

Oct. 12, with a welcome reception in the NORD Exhibit Hall at the hotel.

All attendees will be encouraged to attend this event, where they’ll be

able to meet old friends and make new ones. Additionally, there will be

time set aside for sightseeing in the beautiful city of St. Louis. There

will also be a special social event on Saturday evening, Oct. 14, the

first annual NORD Miniature Golf Tournament: Puttin’ for Rare Disorders.

Join us for this fun-filled event!

Sponsors and Exhibitors

Sponsorship and exhibiting opportunities are currently available! As a

supporter of the NORD Conference, your company will have a unique

opportunity to introduce products and services to this special audience.

A conference brochure will be mailed to all current NORD members and

others who live in close proximity to St. Louis. If you are not a

member but interested in receiving a brochure, or if your company is

interested in sponsoring or exhibiting at the conference, please contact

NORD, Development Office, P.O. Box 8923, New Fairfield, CT 06812; or

e-mail dsugasa@....