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 [Read More]
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 [Read More]
"I dream about APBD research that repairs my cells so that I can walk, have energy to play with my grandkids and sleep at night without pain." - H & R
"I dream that APBD could be identified sooner, as I was treated for MS for 20 years. I dream that more recommendations or treatments could be identified to stop or reverse this disease!" -Jim
"I dream about APBD research that one day we will have a cure and no one else will have to suffer the way my family has." - FR
Volunteer and Family Member
" I dream about APBD research that will find a cure for this debilitating condition!" - Dave
"I dream about APBD research that makes my walking reliable." -Chuck, with his wife, Harriet
"I am very hopeful I will see a cure." -Lori
Friends showing their support for APBD community by wearing stripes!
"I dream about APBD research that finds a cure so that I and others can walk." -RZ
Friends showing their support for APBD community by wearing stripes!
"I am confident that with the support of so many great and caring people, cure for APBD is just around the corner. Let’s not slow down this great momentum! Let’s make APBD patients' dream a reality!" - Emil
"I dream that someday, sooner than later, a treatment and cure will be found. APBD has robbed me of what I was and how much I know I can be." - Andrew
"We dream of Jeff being able to walk unassisted! Let’s find a cure for APBD!" - Beth and Jeff
"I dream of APBD research that discovers both a cure & treatments to alleviate symptoms and also generate a broader awareness of this very rare -- and yet not the rarest -- of genetic disorders." - Penrod Ronson with his [Read More]
"I dream about APBD research that finds a cure!" - Deberah
"I dream about APBD research that that finds a cure to help me walk "normally", function in daily activities "normally", be able to drive, with my brain functioning with stability..." - Sheila
