For families affected by ENPP1 Deficiency, ABCC6 Deficiency, GACI, ARHR2, and related conditions, connection can be life-changing.

A diagnosis can bring questions, uncertainty, and the feeling that no one nearby truly understands what your family is experiencing. The Brighter Hope Foundation 2026 Patient & Family Conference in Paris, France, taking place August 7–10, 2026, is designed to bring families, patients, researchers, medical professionals, and advocates together in one supportive place.

Whether your family is newly diagnosed, has been navigating this journey for years, or you are attending in support of someone you love, this conference offers an opportunity to feel more informed, connected, and encouraged.

What to Expect at the 2026 Patient & Family Conference

The Brighter Hope Foundation Patient & Family Conference is a meaningful weekend focused on education, support, community, and hope.

Attendees can expect:

  • Opportunities to meet other patients and families
  • Educational sessions with medical professionals, researchers, and presenters
  • Time to ask questions and learn more about rare disease care, research, and advocacy
  • A welcoming environment for children, teens, parents, caregivers, and extended family
  • A Friday Meet & Greet dinner followed by the Worldwide Walk
  • Saturday conference sessions, lunch, and coffee breaks
  • Conference materials and helpful resources
  • Childcare and activities for registered children up to age 17
  • A special visit to Disneyland Paris for patients and their families on August 9–10

Connect With People Who Understand

Living with a rare disease can feel isolating. Many families may never meet another person with the same diagnosis in their everyday community.

This conference creates space for families to connect face-to-face with others who understand the medical, emotional, and practical realities of living with these conditions.

For many attendees, this connection can be one of the most powerful parts of the weekend.

Families may have the opportunity to:

  • Meet others affected by ENPP1 Deficiency, ABCC6 Deficiency, GACI, ARHR2, and related conditions
  • Share experiences, questions, and encouragement
  • Build lasting relationships within the Brighter Hope Foundation community
  • Help children, teens, and siblings feel less alone
  • Learn from families who are at different stages of the journey

For continued support beyond the conference, Brighter Hope Foundation also offers a Support Group for Patients and Families and shares real-life Patient Stories.

Learn From Experts and Advocates

The conference is also an important opportunity to learn. Attendees will have access to sessions designed for patients, families, medical professionals, researchers, and presenters.

These conversations can help families better understand:

  • Diagnosis and symptoms
  • Disease progression
  • Treatment considerations
  • Current research
  • Advocacy opportunities
  • Ways to support patients and families
  • Ongoing needs within the rare disease community

For those who are still learning about these conditions, Brighter Hope Foundation offers helpful educational resources, including:

Attending in person can help families feel more confident asking informed questions, advocating for care, and staying connected to new information and community updates.

A Family-Friendly Conference Experience

The 2026 Patient & Family Conference is designed with families in mind.

Registration includes:

  • Friday Meet & Greet dinner
  • Saturday conference sessions
  • Lunch and coffee breaks on Saturday
  • Conference materials
  • T-Shirt for those participating in the Worldwide Walk
  • Childcare and children’s activities for registered children up to age 17

This makes it easier for parents and caregivers to participate in sessions while children and teens have age-appropriate activities and opportunities to be part of the community.

The conference weekend will also include a visit to Disneyland Paris for patients and their families on August 9–10. This special experience adds joy, connection, and lasting memories to a weekend centered on hope.

Support the 2026 Worldwide Walk Annual Fundraiser

This year’s Worldwide Walk Annual Fundraiser will take place on August 7, 2026, during the conference weekend.

The Worldwide Walk is a meaningful way for the Brighter Hope Foundation community to:

  • Raise awareness
  • Honor patients and families
  • Support rare disease advocacy
  • Fund important programs and resources
  • Bring the global community together

You can help by:

  • Creating a team
  • Joining an existing team
  • Making a donation
  • Sharing the fundraiser with family, friends, and your community

Whether you are attending the conference in Paris or supporting from home, the Worldwide Walk gives everyone a way to be part of the mission.

Learn more about how to participate in the 2026 Worldwide Walk or make a gift through the Donate Now page.

Why This Conference Matters

The Brighter Hope Foundation Patient & Family Conference is more than an event. It is a chance to come together, learn, and be reminded that no one has to navigate this journey alone.

This conference matters because it helps families:

  • Feel seen, heard, and supported
  • Build meaningful connections
  • Learn from experts and researchers
  • Access helpful resources
  • Strengthen their ability to advocate for care
  • Participate in awareness and fundraising efforts
  • Celebrate hope, resilience, and community

For newly diagnosed families, the conference can offer reassurance and guidance. For long-time community members, it can offer renewed strength and deeper connection. For medical professionals and researchers, it is an opportunity to listen, learn, and collaborate with the people most impacted by these conditions.

Most of all, the conference is a celebration of the Brighter Hope Foundation community and its shared commitment to awareness, research, advocacy, and hope.

Register for the 2026 Patient & Family Conference

Join Brighter Hope Foundation in Paris, France from August 7–10, 2026 for a powerful weekend of education, connection, and community.

Visit the 2026 Patient & Family Conference landing page to learn more about:

  • Registration
  • Hotel information
  • Conference programme
  • Presenters
  • Kids and teens activities
  • Travel details
  • Disneyland Paris
  • Frequently asked questions
  • The Worldwide Walk

We hope to see you in Paris.