October 25, 2021 We're excited to share this ad that we developed for the Rare New England's (RNE) Annual Conference this past October. Raising the public profile and recognizing the hallmark symptoms of APBD is a crucial facet of [...]
September 30, 2021 New York, NY – The APBD Research Foundation is excited to partner with the Association for Glycogen Storage Disease (AGSD) on the development of healthcare guidelines for APBD and related Type IV Glycogen Storage (GSD [...]
August 26, 2021 The APBD Research Foundation is pleased to announce the opportunity of one $99,025 grant or two $49,513 grants through the University of Pennsylvania's Orphan Disease Center Million Dollar Bike Ride Pilot Grant Program. For six consecutive years, [...]
New York, NY – The Adult Polyglucosan Body Disease (APBD) Research Foundation has been selected to participate in a disease prevalence study led by the Rare Genomes Project. As a Chan Zuckerberg Initiative - Rare As One grantee, the [...]
THANK YOU! We had 89 enthusiastic and imaginative virtual riders on the Tour de Friends team this year! The selfies we share here were fun to collect but also accomplish something very important. They show donors, researchers, physicians, pharmaceutical leaders, and government decision [...]
New York, NY -- Adult Polyglucosan Body Disease (APBD) researcher Felix Nitschke, PhD at UT Southwestern Medical Center recently received a $121,268 grant to advance rare disease research from the University of Pennsylvania’s Million Dollar Bike Ride (MDBR) program. For the fifth [...]
TV HOST ALI ROSEN AND MASTER CHEF JEFFREY YOSKOWITZ SPREAD AWARENESS OF JEWISH GENETIC DISEASES AT “ROOTS: Jewish Genes and Cuisine” Online Event Benefited the Adult Polyglucosan Body Disease Research Foundation NEW YORK, March 5, 2021 -- Emmy-nominated TV personality [...]
Meet Our Honoree Dr. Jesse Cedarbaum is Professor, Adjunct of Neurology and Psychiatry at Yale Medical School and Founder and Head of Coeruleus Clinical Sciences, LLC. Dr. Cedarbaum currently serves on the Foundation’s Pharmaceutical Development Committee, where he is helping [...]
The APBD Research Foundation today announced that Angela Genge, MD, FRCPS, -- executive director of the Clinical Research Unit at the Montreal Neurological Institute-Hospital -- has joined the Foundation’s Scientific Advisory Board. "Dr. Genge is a world-renowned expert in rare [...]
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, [...]
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, [...]
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 [...]
We are excited to have “Life Through a Lens” featured at the Berkshire Jewish Film Festival on July 6. Additionally, we are honored to have Dr. Edwin H. Kolodny -- Chair of our Scientific Advisory Board -- conduct a TalkBack [...]
Thank you for making #ShowYourStripes a great success this year in honor of Rare Disease Day! This past week, our APBD community did #ShowYourStripes and more than 12 people shared a quote about their hopes and dreams for APBD research [...]
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 [...]
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 [...]
The APBD Research Foundation and the Orphan Disease Center, part of the Perelman School of Medicine at the University of Pennsylvania, are pleased to announce the recent winners of two ‘Million Dollar Bike Ride’ research grants. These important research grants will [...]
We are honored to have been chosen to participate in this year’s Rare Disease Film Festival to take place May 17th and 18th in New York City*. There were more than a dozen sponsors in 2019, including NORD, Global Genes, [...]
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 [...]
Leading Scientists and Physicians in Neurology Report on Research Progress at 13th Foundation Scientific Advisory Board Meeting The Foundation’s Scientific Advisory Board (SAB) Meeting held on May 5, 2019 brought together an international research team to discuss the latest advances [...]