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 [Read More]

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 [Read More]

March 21st, 2020|

H & R’s Dream

"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

February 29th, 2020|

Jim’s Dreams

"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

February 29th, 2020|

FR’s Dream

"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

February 29th, 2020|

Art

Volunteer and Family Member

February 29th, 2020|

Dave’s Dream

" I dream about APBD research that will find a cure for this debilitating condition!" - Dave

February 29th, 2020|

Chuck and Harriet’s Dream

"I dream about APBD research that makes my walking reliable."  -Chuck, with his wife, Harriet

February 29th, 2020|

Lori’s Hope

"I am very hopeful I will see a cure."  -Lori  

February 29th, 2020|
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