Are there good support groups for adrenoleukodystrophy?
There are multiple support groups for X-linked adrenoleukodystrophy. Some of these groups include the Adrenoleukodystrophy Foundation, ALD Connect, ALD Life, the Myelin project, and the United Leukodystrophy Foundation. All of these support groups have an online presence. Additionally, the Adrenoleukodystrophy Online Support Group is a support group exclusively on the Internet.
- United Leukodystrophy Foundation. http://ulf.org/who-we-are
- ALD Foundation. http://aldfoundation.org/
- ALD Connect. http://www.aldconnect.org/about_us.php
- The Myelin Project. http://myelin.org/about-us/
- Adrenoleukodystrophy Online Support Group. http://www.adrenoleukodystrophysupport.org/
- ALD Life. http://www.aldlife.org/
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How can I connect with others who have family members with X-linked adrenoleukodystrophy?
Support groups are a fantastic way to meet other families affected by adrenoleukodystrophy. Many of the support groups for adrenoleukodystrophy have forums or Facebook groups that allow parents and families to connect with one another. The Internet has been a powerful tool for rare disorders, allowing people to connect across states, countries, and continents. Please see: the ALD Foundation, the Myelin Project, ALD Life, or the Adrenoleukodystrophy Online Support Group.
How do I start a support group for adrenoleukodystrophy?
There are many existing support groups that you can participate in. Additionally, ALD support has opportunities to participate in online Forums or groups. You can join an already formed group or form your own with people you meet. Please see: http://adrenoleukodystrophysupport.org/.
How can a family get more involved in the X-linked adrenoleukodystrophy community?
Many of the support groups have opportunities to take action to support awareness and research for X-linked adrenoleukodystrophy. For example, the Myelin Project has opportunities to participate in fundraisers and attend related conferences. ALD Connect offers memberships and opportunities to enroll in clinical trials.
Where else can I hear about family experiences of X-linked adrenoleukodystrophy?
Many support group websites offer stories of families affected by adrenoleukodystrophy. The ALD Life organization offers many patient stories in their ALD Diaries. The 1992 film Lorenzo’s Oil depicts the story of one family whose son, Lorenzo Odone, was diagnosed with X-linked adrenoleukodystrophy.