Support Groups for People Affected by Adrenoleukodystrophy

Support Groups for People Affected by Adrenoleukodystrophy
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Adrenoleukodystrophy (ALD) is a rare genetic disorder caused by mutations in the ABCD1 gene located on the X-chromosome. The disease is characterized by the accumulation of excess saturated very-long-chain fatty acids (VLCFAs) in the brain and adrenal glands.

Dealing with ALD can be stressful. Support groups can help both patients and caregivers of people living with the disease. Below are a few ways to find ALD support groups and network with other patients as well as clinicians.

Register on ALD support resources

There are many organizations that offer a wealth of resources about ALD, including:

Registering on these websites is a great way to network with other patients, researchers, and clinicians, whose experiences in dealing with the disease can be of immense help. You will also learn about upcoming clinical trials, for which you may be eligible.

Check out resources offered by pharma companies

Pharmaceutical companies often offer information about the medicines they are developing as well as other resources and support. Many pharmaceutical companies also let you take advantage of the services of dedicated case managers to help you with any ongoing therapies and support regarding financial matters.

Bluebird Bio, the developer of investigational ALD therapy Lenti-D, offers one such resource called It Might Be ALD. The site offers a wealth of information to patients and healthcare professionals about ALD gene therapy. It also helps you connect with several advocacy organizations.

Enlist in ALD registries

Founded in 2013, ALD Connect is a global collaborative effort to fight ALD. ALD Connect offers a patient portal on which ALD patients and caregivers can register themselves to help advance ALD research and therapy development.

Registering on the ALD Connect portal offers a lot of benefits, such as first-hand information about ongoing research and upcoming clinical trials, forums for discussion, diagnostic tools, and evaluating and overseeing new ALD studies.

Another such patient registry is the Minnesota ALD Registry Study and Biobank (NCT03789721), which is an observational study that aims to enroll 1,000 participants at The Masonic Cancer Center, University of Minnesota. The study is estimated to be completed in February 2030.

Follow support groups on social media

Most of the support groups listed also have a presence on social media platforms such as Facebook, YouTube, and Twitter. You can follow these organizations from wherever you are and share useful tips and stories. Following support groups on social media can help you find local support groups in your area and alert you about new developments in the field.

Keep a tab on our website

Adrenoleukodystrophy News offers up-to-date information about new developments in ALD research. Our website offers health insights as well as information about various aspects of the disease, new therapies being developed, and ongoing and upcoming clinical trials. Subscribing to our newsletter can help you keep up with all the important news relevant to ALD.

 

Last updated: Jan. 30, 2020

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Adrenoleukodystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.

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