The National Organization of Rare Disorders (NORD) is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD was first formed when a number of voluntary health agencies and support groups banded together to support the passage of the Orphan Drug Act. This federal legislation encourages pharmaceutical companies to develop drugs which would otherwise be of "limited commercial value". NORD makes annual grants for clinical research and provides medication assistance for pharmaceutical companies.
One out of every 12 people suffers from a rare disorder. NORD provides information on over 5,000 rare disorders. They are a not-for-profit charitable organization commited to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Click here to visit NORD and access reference materials from their rare disease database. Here is the entry for Parry-Romberg Syndrome.
If you would like to register with NORD, send an e-mail to them at orphan@rarediseases.org for an informational packet and registration forms. Be sure to state your name and postal address in your email to them. Anyone who contacts NORD may receive this informational packet and Networking Permission Form free of charge.
When you receive the registration forms in the mail, you will also be able to enroll in the Networking Program for Parry-Romberg Syndrome. (This is not the same as The Rombergs Connection) By registering with NORD, we are supporting their important work, and we are also joining a network of people with Parry-Romberg Syndrome. As our community expands, we will show that we are not so "rare" after all, and perhaps this will set in train events leading ultimately to the development of a therapy for this disorder.
Those who are also interested in becoming individual members of NORD and receiving membership benefits are asked for an annual $30 membership contribution. Membership benefits include their regular newsletter, "Orphan Disease Update," which is published three times a year; reduced rates to their annual Patient/Family Conference; membership in their Family Networking Program for those diagnosed with a particular rare disorder and/or immediate family members; and additional benefits.
If individuals are interested in joining their Networking Program yet the membership contribution is not feasible at the time, NORD will waive this contribution and provide membership in the Networking Program.
A personal note from Stephen McKenzie, member of The Rombergs Connection.
I wonder whether NORD has ever looked at Parry Romberg's Syndrome. As an accountant/computer person with no knowledge of medicine (does it show??) it seems to me that as there are drugs which improve circulation, reduce inflamation, and even (as I read somewhere recently) reduce the wasting associated with AIDS, there must be something out there which slows the atrophy associated with Pary Romberg. If anyone has trouble navigating through NORD's pages, please contact Stephen at slm@ozemail.com.au for further assistance. I promise to do the best I can to help. Take Care, Stephen
Here are some additional NORD links: