Istanbul is a city where East meets West. It connects Europe and Asia, both by land and by culture. It was the perfect place for the Convergence of Science and Hope conference. Families, doctors, researchers, and leaders came together to learn, to share, and to bring hope to everyone living with Rett syndrome.

The word convergence means coming together. In Istanbul, we saw this in every way. Two continents meet across the Bosporus, and in the same way, families, science, and hope came together to create something stronger.

From the moment we arrived, we felt at home. Families we had never met welcomed us with open arms. Even though we came from different countries, we shared the same journey. We are all traveling a rare path that few others understand. The love families have for their loved ones with Rett could be felt in every conversation and every smile.

Key take aways from the meeting:

Learning from each other-Parents who have lived with Rett for many years shared their experience with new families. One message was repeated often: You are the expert on your child with Rett.

Families were encouraged to learn as much as possible, ask questions, and talk with their healthcare teams to make the best choices. Knowledge helps us feel confident and reminds us that our voices matter.

Science and progress-Acadia Pharmaceuticals shared updates about Daybue (trofinetide). They announced that they are applying to the European Medicines Agency (EMA) so that more families across Europe can access this treatment.

We also learned about gene therapy. Researchers used clear and simple pictures to explain two ways they are trying to fix the gene that causes Rett. One way uses a smaller or “mini” gene that is delieved through the spine . The other uses the full gene and delivered through the brain. Both methods bring hope for the future.

Understanding pain-A very important message was about pain. Many of us were once told that people with Rett do not feel pain in the same way as others. Experts explained that this is not true. People with Rett can and do feel pain, but they may show it in different ways such as changes in movement, sleep, or behavior. Parents were encouraged to use pain scales and ask their child if medication is needed. Trust your instincts. You know your child best.

Talking about sensitive topics-many families had their loved one in the conference room. We all know our loved ones understand and are smart. Take time before and after events to explain what is happening and what was said.

Community and connection-ORSA Canada had the opportunity to address the audience at the start of event with information on our vision and objectives for the World congress.

Moreover, we were invited to the Rett syndrome Europe annual general assembly that took place Saturday evening just before the gala event. This was round table meeting that welcomed three new countries into the group Greece, Georgia, and Russia. Congratulations to them and to the new board members and well done to the current board members for all that they do to support Rett syndrome.

In addition, Andreas the Canadian Moose was very well received and brought joy and smiles wherever he went. His presence reminded us of the importance of creativity, kindness, and connection in our community. 75+ toys were hand delivered to delegates and families with an invitation to join us in 2028 for the 10th Rett syndrome world Congress.

Also, we are happy to share that world leader profiles will soon be released. These stories will highlight Rett champions from around the world who work tirelessly to improve the quality of life for individuals with Rett. *Not all delegates were able to attend this meeting, but we hope to include everyone by the time we meet again in 2028.

A heartfelt thank you to the Turkey Rett Association and Rett Syndrome Europe for bringing us together and congratulations on creating such a meaningful event.