MEBO PATM : MEBO Research is a National Member Organization with NORD

MEBO's NORD Membership
Application is Approved

I am most excited to announce that NORD's Board of Directors has approved the application for MEBO Research, Inc., as one of NORD's member organizations. As a National Member Organization,we are now proud to be on the "CURRENT LIST OF MEMBER ORGANIZATIONS," and as such, we are encouraged by NORD to display the NORD's Member Organzation Logo on our website and blogs.

WHAT ARE THE BENEFITS OF MEMBERSHIP:
As a member of the NORD membership community, we join the conversation and bring the power of more voices together to achieve mutual goals on behalf of patients and families affected by rare diseases. With broad representation on a geographic and disease-specific basis, NORD can have greater influence on advocacy efforts that benefit all patients with rare diseases.

BENEFITS OF BEING A NATIONAL MEMBER ORGANIZATION:

Advocacy
Policy Development

NORD maintains an aggressive public policy agenda that continues to focus on such key issues as maintaining Health Care insurance reforms and elimination of annual and lifetime caps, expanding SSA Compassionate Allowances, achieving coverage of medical foods, and supporting development of new therapies

Critical Issues Analysis: NORD provides members with analyses of legislative and regulatory activity and public policy that will impact the rare disease community
Education: Member organizations are supported with ongoing educational webinars on policy issues and the public policy process, as well as access to senior level representatives within the FDA, NIH, CMS, and other governmental agencies.
Opportunities to Connect: NORD provides member organizations with the opportunity to connect and gain access to the knowledge base within the membership community and to learn and share best practices on issues of similar concern. These can be related to public policy, or to developing their organization, building capacity and meeting the needs of the patients they represent.
Research Support: NORD supports the research efforts of member organizations through information-sharing related to sources of research funding. NORD also administers a limited number of research grants.
Member Organization Visibility: NORD partners with its members to create greater awareness for them throughout all NORD communications materials and the website, through listing of member activities and events, and attendance at select medical meetings. Patients who contact NORD are also referred to the appropriate member organization.
Voting Privileges: National Member Organizations are eligible to vote for the NORD Board of Directors, as well as on agenda items at the NORD annual meeting.

CRITERIA FOR ORGANIZATIONAL MEMBERSHIP IN NORD
In order to qualify for National Membership, MEBO had to fill the following qualifications:

Proof of 501(c)(3) tax exempt non-profit status...
Dated by-laws with Mission statement compatible with NORD's goals of being patient-centered, and advocating on behalf of patients in the rare disease community.

Names and addresses for a minimum of five board members. MEBO currently has five (5) registered board members in the United States. Although for this National Member Organization application only the listing of the board members of the US charity were required, MEBO also enjoys the support of an additional five (5) member Board registered in England and Wales.
Minimum of three (3) medical/scientific advisors in place. MEBO is most grateful to the following five (5) experts who consented to be our Medical / Scientific Advisors,
Annual Budget approved by the Board.

Policy Requirements:
- Policies on conflict-of-interest for Board and Staff
- Privacy policy that protects the identity of patients and families.

In support of MEBO's Privacy policy, MEBO Research, Inc., has formed and registered an Institutional Review Board (IRB) to oversee all of MEBO's studies involving human subjects to assure that the Federal Policy for the Protection of Human Subjects are adhered to.

It has been, and will continue to be, MEBO Research's focus to establish a strong foundation upon which our international community of sufferers can rest to find organizational strength in order to bring about substantial changes to sufferers' lives by initiating research to find the proper treatment for all types of body odor conditions, including rare diseases, such as TMAU and other yet-to-be-defined genetic conditions that result in chronic and difficult to control body and breath malodor.

María