Table 10.

Support for patients with Alport syndrome

Local renal unit	Your local renal unit can be contacted anytime. You can get information, support from staff and your questions answered that relate to your individual care. Some units have experts who can help with diet, psychological support and social services
National organisations supporting people living with Alport syndrome	These organisations vary in size and focus from country to country. They have a huge amount of resources, news, and support available for people living with Alport syndrome, carers, doctors, and researchers. They can answer your questions and give you information on Alport syndrome, local support groups, clinical trials, treatments, social events, information days, and fundraising. See their websites and social media: Australia: Alport Foundation of Australia—www.alport.org.au, contact email info@alport.org.au Belgium: AIRG Belgique—airg-belgique.org China: Chinese Alport Syndrome Parents Organisation—WeChat, contact email hello@henizaiyigi.com Germany: Alport Selbsthilfe—www.alport-selbsthilfe.de, contact email Vorstand@Alport-Selbsthilfe.de France: AIRG France—www.airg-france.fr, contact email airg.permanence@orange.fr Israel: Alport Foundation Israel—Facebook Italy: A.S.A.L., Associazione Sindrome di Alport—www.alport.it, contact email informazioni.asal@gmail.com Macedonia: contact email gordana_david@yahoo.com Spain: AIRG España—www.airg-e.org, contact email info@airg-e.org Switzerland: AIRG Suisse—www.airg-suisse.org, contact email info@airg-suisse.org UK: Alport UK—alportuk.org, contact email info@alportuk.org, follow @alportuk USA: Alport Syndrome Foundation—alportsyndrome.org, contact email info@alportsyndrome.org, follow @alportsyndromefndn The Netherlands: Nierpatiënten Vereniging Nederland (NVN)—www.nvn.nl, contact email secretariaat@nvn.nl Other countries: contact Alport Syndrome Alliance—alportsyndromealliance.org, contact email workshops@alportsyndromealliance.org
Alport Warriors	A closed Facebook group which is moderated byAlport UK—families and individuals from all over the country and internationally connect to share the key questions and issues they face every day living with Alport syndrome. There is always someone with practical tips and experience to share. See how student Joseph McLean lives with Alport syndrome: https://youtu.be/4bz5-tK6m6w
Alport Avengers	A group of young adults (18–35-year-olds) living with Alport syndrome who provide each other with help around the key time that Alport syndrome impacts their lives most. They help each other practically and thoughtfully through tough times and meet socially on a regular basis. Talking about their condition with their peers is sometimes the only time they feel ‘normal’
Don’t Wait Fund	A fund set up by patient and filmmaker Sam Clarke who cycled 4000 miles around Europe—for parents, people living with Alport syndrome, and siblings to apply for a grant to take up a new activity and/or buy a piece of equipment. https://youtu.be/7jQUSCHoQMc. Here’s how to apply: http://www.alportuk.org/support-alport/dont-wait-fund#
Alport social weekends and Alport information days	Check out the events in a specific country by going to the websites for the specific country listed above. Events are hosted to engage those who are newly diagnosed and connect them with others in similar situations and hear about the latest research. People living with Alport syndrome organise the events withthe local clinical teams and make sure all age groups get their questions answered and have fun and get to know the cities they visit. Young patients in Manchester, UK share their experiences: https://www.youtube.com/watch?v=77p7nzKz6nc
International Experts	International experts are available to explain the complexities of Alport syndrome—for both clinicians and people living with Alport syndrome
Peer Support	A chat on the phone with someone who knows what it feels like to live with Alport syndrome can be life-changing. Connect to local or national services for grants, psychosocial support, or someone nearby
International Alport syndrome workshop	Get involved in research and join an International Alport workshop. For those interested in science and research and travel, Alport UK organise a unique programme of international workshops that bring together the Alport Syndrome Alliance—a global network of inspiring people living with Alport syndrome, clinicians, and researchers developing new treatments and knowledge. As part of a wider mental health programme, we encourage young adults to travel abroad and build their confidence to ask questions about their condition and contribute to research discussions. Highlights from Siena workshop in Italy: https://youtu.be/QH8mDTmKaVU
Health Talk	This website is a hub where thousands of people have shared their experiences on film of what it is like to have a health condition in addition to explanations from experts. There are many on Alport syndrome. See website https://healthtalk.org (see Alport syndrome stories)