NORD Member Organization Regional Meetings

2012 Membership Meetings

Over the course of the year, NORD plans to host three patient organization meetings, located throughout the US, and 2-3 follow-up webinars. One of the meetings will be designed to provide patient organizations with an update on NORD advocacy and legislative agenda, providing ways for them to become more involved in national initiatives that will benefit their patients and families. Some of those strategies and tactics include working closely with the NIH, FDA, SSA, and other federal agencies, as well as with professional medical societies and the industry, and also contributing to the development of drugs and treatment protocols for these diseases.

The other meetings will be topic-specific within the area of capacity building, responding to the unique interests and concerns we've heard from our members. NORD takes the success of member organizations seriously, and recognizes that to achieve their goals and objectives on behalf of the rare diseases they represent; they must have a strong infrastructure. These regional meetings provide an important venue to provide and share information on strategies and best practices in board development, developing organizational business plans and solid budgets, identifying and development effective programs, as well as tools for developing new programs such as a registry or rare disease research program.

More details about specific dates, venues, and topics will be coming soon.

Highlights of the Chicago, New York and San Francisco Regional Membership Meeting

In 2011 and early 2012, these meetings provided an excellent venue for different organizations to meet and learn from each other at the conference and through future interactions. The programs were very interactive and highlighted discussion included:

• NORD's advocacy goals for 2011/2012 and how you can play an active role in helping accomplish them
• How to become more involved in national initiatives that will benefit your patients and families
• How to work more closely with NIH, FDA, and other federal partners
• How to grow your organization and benefit from the experiences of other NORD Member Organizations

Representatives of the patient organizations that attended expressed sincere appreciation for the information and, especially, for the dialogue with NORD and other patient organizations. Regardless of the disease or the size of their organization, they are connected by common challenges and goals and learned much from each other. NORD is committed to providing the patient community with opportunities to learn from each other, and for us to learn about their needs so they can be reflected in the work that we do on the broader national/global level. In summary, it is our goal to expand this program to be responsive to the needs of both member organizations and patient organizations who are in the process of establishing their programs.