Dr. Orhan Akman presents new Second APBD mutation discovery at American Association Neurology meeting April 2015 Washington, D.C.
11th Annual APBDRF Scientific Advisory Board Meeting April 15, 2015 NYC – abstracts
APBDRF Accepted into NORD
As of February 2, the APBD Research Foundation was accepted as a member organization in NORD, the National Organization for Rare Disorders. Through NORD, member organizations gain a stronger voice in rare disease visibility, advocacy, policy development, education, and research support. Becoming a NORD member reflects well on the APBDRF. Acceptance was by no means a shoe-in. NORD reviewed and approved of our organizational infrastructure, as well as our actual work on behalf of APBD patients. They confirmed that the research foundation has appropriate by-laws, board membership, scientific advisors, financial budgeting, board meetings, and record-keeping. They reviewed our Annual Report and the educational materials that we distribute. We’re quite proud of this achievement. Our thanks go to the many hands who developed our application package
Rare Disease gets the Spotlight
APBD is awarded Guidestar Level: Silver
Great News. The APBD Research Foundation has recently earned the Silver participation level from the GuideStar Exchange. This is a testament of the Foundation’s commitment to datatransparency. Guidestar collects, organizes, and presents the information on charitable organizations in an easy-to-understand format. By providing up-to-date information to GuideStar, we are ensuring that timely and accurate information about the APBDRF reaches the 10 million annual visitors to GuideStar’s website and millions of other viewers reached through GuideStar’s network of donation providers, search engines, donor advised funds, foundations, and more. This enables potential donors and grant providers with vital information about the Foundation.