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What is ALD?
About Us
Clinical Trials & Research
Resources
Get Involved
News
Contact Us

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RECENT COMMENTS

RECENT POSTS

SwanBio Therapeutics Announces $56 Million Series B Financing to Advance Novel Gene Therapies for Neurological Conditions
May 18, 2022
Poxel Announces PXL065 and PXL770 Granted Orphan Drug Designation from the U.S. FDA for X-Linked Adrenoleukodystrophy
May 17, 2022
Natalie Grant presents at 2022 AAN Meeting
May 5, 2022
Dr. Jonanlis Ramirez Alcantara presents at the 2022 Pediatric Endocrine Society Meeting
April 30, 2022

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(833) 525-3266
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[email protected]
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ALD Connect
35 Village Road Suite 100 #353306
Middleton, MA 01949, USA

Latest News

SwanBio Therapeutics Announces $56 Million Series B Financing to Advance Novel Gene Therapies for Neurological Conditions
May 18, 2022
Poxel Announces PXL065 and PXL770 Granted Orphan Drug Designation from the U.S. FDA for X-Linked Adrenoleukodystrophy
May 17, 2022
Natalie Grant presents at 2022 AAN Meeting
May 5, 2022
Dr. Jonanlis Ramirez Alcantara presents at the 2022 Pediatric Endocrine Society Meeting
April 30, 2022

Instagram

Join us next week! Johanna Bond will be joining ou

Join us next week! Johanna Bond will be joining our Community Call for Symptomatic Women on Monday, February 28th at 7:00 PM Eastern. Johanna is a Licensed Mental Health Counselor (LMHC) and writer living in Rochester, New York. Register using the link in our bio!

Happy Twosday to our ALD community! Please conside

Happy Twosday to our ALD community! Please consider donating $22 to support our programs and projects, including our upcoming Externally-Led Patient-Focused Drug Development meeting!

https://aldconnect.org/donate/

Dr. Troy Lund will be joining our Cerebral ALD Com

Dr. Troy Lund will be joining our Cerebral ALD Community Call this week on Thursday, February 24th, 2022 at 5 PM EST! This is a great opportunity to ask the expert!

Do you have a child in the monitoring phase? Is your son is post-transplant? Are you a man with AMN who worries about cerebral ALD? Maybe you just want to listen and learn.

Register for our Community Call and bring all of your cerebral ALD questions. You can also post questions below in the comments. As a reminder, these calls are not recorded!

Register using the link in our bio.

February Community Calls are posted! Register usin

February Community Calls are posted! Register using the link in our bio!

We are thrilled to announce that Dr. Patricia Muso

We are thrilled to announce that Dr. Patricia Musolino has joined the ALD Connect Board of Directors. Dr. Musolino is a critical care and vascular neurologist at Massachusetts General Hospital/Harvard Medical School. She is an expert in neurogenetics and vascular neurology. Her laboratory work focuses on leveraging insights from neuroimaging and gene-editing tools to understand how single genes mutations alter blood brain barrier and cerebrovascular function. Dr. Musolino has been involved with ALD Connect for many years, especially with our Spanish-speaking community. Please join us in welcoming her!

We are thrilled to announce that we will be hostin

We are thrilled to announce that we will be hosting an Externally-Led Patient-Focused Drug Development meeting (EL-PFDD) on July 22, 2022.

Our proposed target patient population for this meeting is Adrenoleukodystrophy (ALD) in Adulthood:
-Men with adrenomyeloneuropathy (AMN)
-Men with cerebral ALD
-Symptomatic women with ALD

The meeting will be held virtually, which will allow increased participation across the United States and the world. The meeting will be centered around patient and caregiver perspectives, which are critical to help provide context when FDA makes regulatory decisions for new drugs. We will ask community members to participate by calling in, answering poll questions, and writing comments.

We believe this EL-PFDD meeting will allow the FDA and other key stakeholders to obtain a wide range of patient, caregiver, and healthcare provider input on ALD. This includes their perspectives on their condition, its impacts on daily life, the landscape of current treatment options, as well as input into outcomes and patient preferences for future therapies.

Our goal is to publish a Voice of the Patient Report that documents the severe disease burden and unmet medical need of ALD and AMN in patients' own voices. Our hope is that it will influence every stage of drug development.

Please save the date and watch for details in the coming months.

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