AAMA

Actually that acronym doesn't stand for a company, but the name of this posting. It means, Acronyms and More Acronyms.

Here are some of the common ones that you will see or hear in discussions about rare diseases. We won't go into a lot of detail about the particular term, but a link is provided to learn more about the organization or term. In some cases I borrowed the description directly from the organization's web site.

1. NIH ORDR
The National Institute of Health Office of Rare Diseases Research.

http://rarediseases.info.nih.gov/

The Office of Rare Diseases Research (ORDR) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH), the Federal focal point for biomedical research. ORDR coordinates and supports rare diseases research, responds to research opportunities for rare diseases, and provides information on rare diseases. Public Law 107-280, the Rare Diseases Act of 2002, established the ORDR by statute.

Our note: This is the organization that is so important in supporting rare disease patient advocacy groups such as the Vasculitis Foundation and the PAN Network. This is the organization that we are asking lawmakers to recognize and fund because their work impact the rare disease community.

2. NORD
The National Organization of Rare Diseases

http://www.rarediseases.org/info/about.html

Mission Statement
The National Organization for Rare Disorders (NORD), a 501(c)3 organization, is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.

NORD Services and Programs
NORD provides information about diseases, referrals to patient organizations, research grants and fellowships, advocacy for the rare-disease community, and Medication Assistance Programs that help needy patients obtain certain drugs they could not otherwise afford.

Our Note: If you or a loved has a rare disease you want to go to the NORD website. They have a massive database of over 6000 rare diseases affecting more than 25 million people.

3. CPAG
The Coalition of Patient Advocacy Groups

http://rarediseasesnetwork.epi.usf.edu/CPAG/index.htm

One impressive feature of the Rare Diseases Clinical Research Network is the direct involvement of supporting patient advocacy groups in network operations, activities, and strategy. Each consortium in the network includes relevant patient advocacy groups in the consortium membership and activities. These patient advocacy group representatives serve in an advisory capacity within their own consortia.

Collectively, the Coalition of Patient Advocacy Groups (CPAG) represents the perspective and interests of all patient advocacy organizations associated with the clinical research consortia. The CPAG group meets frequently throughout the year via teleconference and face-to-face meetings.

CPAG members influence the direction of the Rare Diseases Clinical Research Network as a whole. They participate in network-level discussions and meetings. The CPAG coalition is a voting member of the RDCRN Steering Committee.

Our Note: The organizations that Joyce, Heather and I are representing in the bike ride are part of CPAG. And there are other rare disease patient advocacy groups in CPAG. Together we are working with the NIH ORDR to help the patient community through numerous projects.

Now it's time to go on another bike training ride this weekend.

One last acronym....MBHLH.
It means, My Butt Hurts Like H---

This is one that has particular relevance after 28 miles on the trail.

Thanks for reading and following and hopefully learning.

The VF Power Pedal for Rare Diseases Riders