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You’re Invited! Alport Connect Together Meeting August 1-2 in Cleveland

March 23, 2020 Update: As you are aware, many upcoming gatherings and meetings across the country and internationally are being cancelled or postponed due to concerns over the COVID-19 pandemic. At this time, approximately five months in advance of our meeting, we are hopeful the Alport Connect Together meeting will take place as scheduled but are aware this may not be the case. We are monitoring the situation closely and will comply with all Goverment, Centers for Disease Control, and World Health Organization recommendations. Please check this page frequently for updates. Additionally, any event changes will be emailed directly to registrants. Your health and safety are of the highest priority to us. In the meantime, if your plans include a flight to Cleveland for the meeting, we encourage you to consider purchasing travel insurance out of an abundance of caution. Please note: Offered and accepted travel stipends for the Alport Connect Together meeting will be distributed at the event. In the unlikely circumstance the meeting is cancelled, travel stipends will not be honored.

Join us August 1 & 2, 2020 at the InterContinental Hotel – Cleveland, with experts from the world-renowned Cleveland Clinic, hosted by Dr. James Simon. Tickets ($15/each) include the full two-day event.

• Choose from a variety of presentations by medical experts based on your interests, developed by input from patients.
• Learn the latest information in Alport syndrome treatment, research, clinical trials, nutrition, mental health, and much more.
• Connect with other Alport families and build your network of support.
• Enjoy social time with your new and/or current Alport community of friends.
• Separate weekend-long programming designed just for teens ages 13-18.
• Separate weekend-long programming designed just for ages 9-12.
• Child care available upon advance request.


Hotel accommodations at the InterContinental are now available and, thanks to Cleveland Clinic, offered at the deeply discounted rate of $159.00/night.


Travel Stipends are limited and will be provided on a first come, first served basis. Stipends are available to you unless otherwise noted in this message. Please note, those under the age of 9 do not qualify for a travel stipend. All current and future ACT registrants will be contacted regarding their eligibility (based on distance from event). If you qualify for a stipend, a reimbursement check will be given to you ACT weekend.


Traveling 100-249 miles to Cleveland, stipends are $150/person

Traveling 250-749 miles to Cleveland, stipends are $300/person

Traveling 750 + miles to Cleveland, stipends are $500/person

In the interest of assisting as many as possible, total travel stipends per family (living in the same household) will not exceed $1,000.

Thank you to our 2020 ACT sponsors: Sanofi Genzyme and EveryLife Foundation for Rare Diseases.

If you have any questions, please email [email protected].

Register for Our 2020 ACT Event Today

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