Rare Trait Hope Fund

Monthly parents' meeting will be help tomorrow, Sunday February 22. Usual time and place. Let me know if you need an invite.

Almost a month has passed and this Sunday (August 24, 2025) is the global AGU meeting. The zoom invitations is the same as the last one. Do you have it? If not, please reach out.

This Sunday we will discuss the upcoming gene therapy clinical trial in detail (a few doctors might be present on the call to answer questions).

Translations will be available with the help of AI.

This Sunday (July 27, 2025) is the global AGU meeting. Zoom invitations were sent to over 60 people. Did you get one? If not, please reach out. Translations will be available with the help of AI.

Many of you are joining the meeting tomorrow and got an invitation. Please, send email to info (at) raretrait.com if you want to join and don't have an invite yet. The Zoom meeting it tomorrow (Sunday) at 11 am US Standard time or 17:00 European Central time.

This is the message for our Scandinavian AGU community. The meeting will be held this Sunday, 6 p.m. Helsinki time with translations to Finnish and Swedish. We will discuss AGU gene therapy, clinical trials, Natural History study, etc. Please, email [email protected] for a link to this Zoom meeting if you would like to participate.

Another meeting will be held in 2 weeks for the global AGU. More updates will be posted shortly.

We are thrilled to share the release of "Nazira: Purrpose like no other" book, a heartfelt journey narrated by Nazira—witty and wise Persian cat who has been by the side of Daniel and Alexander from diagnosis till now. This unique meow-moir offers an intimate glimpse into a family journey trying to create a life-changing treatment for their sons and others with an ultra-rare genetic condition, Aspartylglucosaminuria (AGU). This book is shares not only their struggles but also love and humor that you cant live without in these situations.
Every dollar from the book (available globally) go directly to Rare Trait Hope Fund to pay for the drug and to finance clinical trials for AGU. With your support, we’re closer to offering a cure—for children around the world with this devastating condition. Our first goal is to offer treatment to 10 children. By purchasing, sharing, or donating (this Giving Tuesday too), you’re helping us take a giant leap toward saving children’s lives.
➡️ Get your copy of the book today:

Nazira: Purrpose like no other Meet Nazira, a brilliant and empathic cat who shares her unique perspective on life with two brothers battling an ultra-rare genetic disease, Aspartylglucosaminuria (AGU). In this heartfelt memoir, Nazira narrates the inspiring journey of their parents’ relentless quest to secure a diagnosis and ....