Alport Syndrome resources
Alport Syndrome Foundation (ASF)
URL: https://alportsyndrome.org/
The ASF offers a variety of resources for patients, including educational materials, support groups, and information on clinical trials. Their website provides comprehensive information about Alport Syndrome, covering topics such as diagnosis, treatment, hearing loss, and eye abnormalities. You can access their website, engage with their social media platforms like Facebook, YouTube, LinkedIn, Twitter, and Instagram, or become a member.
Alport UK
This patient-led organization provides various support services, including a Facebook page, Instagram, Twitter, YouTube channel (“Alport Workshops”), and a Young Adult WhatsApp group. They aim to connect individuals affected by Alport Syndrome and offer reliable information about the condition.
Healthtalk
This website, funded by Alport UK, is another valuable resource that provides insights into the experiences of people living with Alport Syndrome. The site features interviews with patients, family members, and healthcare professionals, offering a diverse range of perspectives on the condition. Visitors can explore topics such as the diagnosis journey, managing symptoms, genetic testing, and the emotional impact of Alport Syndrome.
Kidney Care UK
URL: https://kidneycareuk.org/
While not exclusively focused on Alport Syndrome, this charity provides support and resources for people with all forms of kidney disease, including information on managing symptoms, financial support, and treatment options like dialysis and transplantation.