Home » News releases

Caregiver/Family Chat Group

We hear you, and we are here for you. Announcing the Caregiver/Family Chat Group If APBD touches your life through a family member or loved one, whether you are a hands-on caregiver or within the circle of emotional support, [...]

October 14th, 2020|

APBD Research Proposals Wanted

Brooklyn, New York, August 19, 2020 -- APBD Research Foundation in conjunction with the University of Pennsylvania launches a call for APBD research proposals.  Letter of Intent are due to the UPenn Orphan Disease Center no later than September 18, [...]

August 19th, 2020|

Foundation’s Biomarker Workshop Spurs Collaboration and Hope

On June 22, the Adult Polyglucosan Body Disease Research Foundation hosted its first Biomarker Workshop to facilitate a vigorous exchange among researchers and patient advocates regarding potential biomarkers for drug discovery and development targeting APBD. The Workshop -- hosted [...]

June 23rd, 2020|

COVID-19 Resources

A list of resources, information and activities.  Click on the text of any of the items listed to go to the website. Government Resources: CDC (Center for Disease Control) WHO (World Health Organization) Rare Disease Organizations Resources: Global Genes NORD [...]

March 27th, 2020|

Exciting Announcement for the APBD Community

Dear Patient Community, Family Members, Cheerleaders, Donors, Researchers and Clinicians: Today is a special day. We have important news to share with you. We are excited to announce that we are one of 30 recipients of a $450,000, two-year Rare [...]

March 21st, 2020|

Pedaling for Progress in APBD Research

The APBD community said, “Let’s Roll!” to the Penn Medicine Orphan Disease Center’s Million Dollar Bike Ride for rare disease research again this year. Our 33-member team, the “Tour de Friends,” participated from locations all over the country in their neighborhoods and in [...]

July 16th, 2019|

New APBD Brochures Available

New APBD Brochures Available The APBD Research Foundation is proud to announce that we have two updated brochures available online and in print. The physician's booklet gives a detailed overview of APBD for medical professionals, while the general information brochure [...]

July 16th, 2019|

Penn Medicine Orphan Disease Center Awards Two Research Grants

The APBD Research Foundation and the Penn Medicine Orphan Disease Center are pleased to announce the two winners of 2018 Million Dollar Bike Ride research grants.  These important research grants will be applied to two promising studies that are investigating [...]

January 19th, 2019|

Gregory Weiss (1947 – 2018)

Gregory Weiss (1947 - 2018) It is with very deep regret that we inform you of the passing today (June 25, 2018) of Gregory Weiss, Founder and President of APBDRF. Make a Memorial Donation I met Gregory thirteen [...]

June 25th, 2018|

Life Through a Lens – UK premiere screening

Dr. Wyatt Yue will introduce the @APBDRF documentary “Life Through a Lens“ at our UK premiere screening at the Oxford International Film Festival on Sunday, May 13th 6pm http://www.oxiff.com/life-through-a-lens

May 1st, 2018|

Global Genes – Medical Student Pairing

APBDRF Board Member David Epstein has been paired with a 3rd year medical student from the University of Maryland. In a program sponsored by Global Genes®, medical students are paired with rare disease patients in an effort to build the [...]

March 15th, 2018|

We need your input to target research

Help us, help you! Dear APBD Patient (with confirmed diagnosis): The Foundation can better target research if we hear from the wide APBD community. Recently, we have heard from some of you on APBD diets, possible new health problems, misdiagnosis [...]

February 2nd, 2018|