Conference:  Frequently Asked Questions

Frequently Asked Questions

Some important dates & deadlines to note are:

Conference Dates:

  • Aug 7, 2026 – Meet & Greet Dinner at 4:30 pm for patients, families, medical professionals, researchers, and presenters, followed by the Worldwide Walk at 7pm
  • Aug 8, 2026 – Full‑day conference & childcare sessions – registration opens at 8:00 am
  • Aug 9–10, 2026 – Disneyland Paris visit for patients & their families

Hotel, Registration & Financial Assistance Programme

  • Early bird registration opens – April 5, 2026
  • Financial Assistance Programme application closing date – May 1, 2026
  • Early bird registration closes – May 15, 2026
  • General registration opens – May 16, 2026
  • Hotel reservation deadline* – July 15, 2026
  • General registration closes – July 15, 2026
  • Last day for child registrations** – July 15, 2006
  • Last day for patient families to register for Disneyland theme park tickets – July 15, 2026
  • Last day for registration cancellations and refunds – July 15, 2026
  • Late registration opens for adults only** – July 16, 2026

*  Or until the group block is full, whichever date comes first. Book early!
** All children must be registered by July 15, 2026. After this date, our external childcare provider will have finalised their staffing and ratios, so we’re not able to add any additional child registrations.

The conference is open to patients diagnosed with GACI or ARHR2, their family members, and medical professionals and researchers.

Yes. Supervised childcare activities will be available during the main conference sessions on Saturday so parents can attend presentations. Children will join their families during the lunch break. More information can be found on the Kids & Teen Activities page.

Yes. Siblings are welcome to attend the conference and participate in the children’s activities programme. Registration is required for all attendees so we can plan appropriately for meals, space, and activities. 

There will be a section on the registration form where attendees can note dietary restrictions or accessibility needs. We will do our best to accommodate these requests.

Presentations will primarily be in English. Additional details regarding translation services will be shared as they become available.

We hope to capture photos and videos from the conference. More details will be shared closer to the event.

Photographs and videos may be taken during the conference. These images may be used by Brighter Hope Foundation in newsletters, on websites, on social media, in promotional materials, or in other publications.

By registering for the Brighter Hope Foundation Patient & Family Conference, you grant permission to Brighter Hope Foundation to use photographs and/or videos of you. You also confirm that you have the authority to grant permission on behalf of all individuals listed on your registration form.

If you do not consent to the use of photographs or videos, please inform the photographer at the conference or email info@brighterhopefoundation.org.

Yes. Registration fees help cover conference expenses such as meeting space, meals, and programming.  

Early Bird Registration (through 15 May)

  • €500 – Pharma / industry
  • €150 –  Patients / caregivers / family members (aged 18 years and over)
  • €150 – Medical providers / researchers
  • €100 – Children (aged 17 years and under)

Regular registration (through 15 July)

  • €500 – Pharma / industry
  • €175 –  Patients / caregivers / family members (aged 18 years and over)
  • €175 – Medical providers / researchers
  • €125 – Children (aged 17 years and under)

Late registration (through 8 August)

  • €500 – Pharma / industry
  • €200 –  Patients / caregivers / family members (aged 18 years and over)
  • €200 – Medical providers / researchers
  • Late registration is not available for children

Conference registration includes:

  • Access to conference sessions 
  • Meet & Greet dinner on Friday, Aug 7th
  • Lunch and coffee breaks on Saturday, Aug 8th
  • Childcare and children’s activities for all registered children up to age 17 years
  • Souvenir conference pamphlet, notebook, and pen 
  • T-shirt for everyone who participates in the Worldwide Walk on Friday, Aug 7th

After completing your registration form for the conference, you will be prompted to pay by some or all of the following payment methods:

  • Credit card (Stripe)
  • Google Pay
  • Apple Pay
  • PayPal

We hope this won’t be necessary, but if you must cancel your conference registration, please email info@brighterhopefoundation.org to cancel your registration.

Cancellation requests received by Brighter Hope Foundation no later than July 15th, 2026, will be refunded.

No refunds can be given for cancellations received after July 15th, 2026 as we will already have submitted final numbers to the vendors. 

If you cancel your conference registration and have already booked your hotel room, you must cancel your hotel reservation directly with the hotel.

Yes. Brighter Hope Foundation will offer a financial assistance programme to help families who may need help attending the conference.  Three levels of support will be available for families who would otherwise be unable to attend.

  • Level 1 – Free conference registration
  • Level 2 – Free conference registration plus assistance toward accommodation
  • Level 3 – Free conference registration plus assistance toward accommodation and travel expenses.

Financial aid is available for paediatric patients and up to two caregivers, or one adult patient and a companion, or bereaved parents.  The closing date for applications for financial assistance is May 1, 2026.

Additional details about how to apply for financial aid can be found here. Families who receive financial aid are expected to participate in all aspects of the conference in order to receive reimbursement after the conference. 

If you apply for financial aid, we ask that you also take part in the fundraising efforts.  This means creating or joining a team and fundraising for the 2026 Worldwide Walk.  The money from this year’s Worldwide Walk will be used to fund the financial assistance programme.  

Apply here:

2026 Financial Assistance Programme

To contribute, you can donate via this link, or mail a cheque to:

Brighter Hope Foundation
PO Box 123
Argyle, Tx 76226,
United States

For more information on how you can support this important event, please contact us at info@brighterhopefoundation.org.

Join us on August 7th, at 7pm for a 3km community walk to raise hope and awareness for those affected by GACI and ARHR2. The Worldwide Walk is our annual fundraiser, and all funds raised this year will support the Financial Assistance Fund, helping families attend the conference.

If you apply for financial aid, we ask that you also take part in the fundraising efforts.  This means creating or joining a team and fundraising for the Worldwide Walk.

Find out more about the Worldwide Walk here.

For more information on how you can support this important event, please contact us at info@brighterhopefoundation.org.

Visa requirements depend on your country of citizenship. Please check the visa requirements for your country well in advance of travel.

Families will be traveling to the conference from many different countries, and there are several ways to reach the Disneyland Paris area. 

  1. Flying – most international travellers will fly into Paris Charles de Gaulle Airport, which is located approximately 35 – 40 minutes from Disneyland Paris.
  2. Driving – if you are traveling from nearby countries in Europe, driving may be the easiest option.
  3. Train – some families may take a high speed train to Marne-la-Vallée-Chessy station, the train station located directly next to Disneyland Paris.  Other families may take a regional train from central Paris.  

More detailed travel information and transportation guidance can be found on the Travel & Transportation Guide page of the conference website.

Yes, you are responsible for arranging your flights and accommodation.

No, but we strongly encourage families to stay at the conference hotel if possible. Staying on site makes it much easier to attend presentations, participate in activities, and connect with other families throughout the weekend.  Additionally, Brighter Hope Foundation works hard to negotiate the best possible hotel rates and to make the most of your registration dollars – keeping the conference affordable and accessible to everyone.

Discounted Hotel Rates for Conference Attendees

  • 2 person room: €181.50 incl. VAT per night per room including breakfast
  • 4 person room: €214.50 incl. VAT per night per room including breakfast
  • 6 person room: €234.50 incl. VAT per night per room including breakfast

These prices include VAT.  A city tax/tourist tax of €8.45 per adult (18 years and older) per night is not included and is payable at check-in.

Hotel Booking Instructions

When booking your hotel room, please use the booking code in your conference registration email.

Please make sure to pick the correct room rate – “Promotional price – Breakfast Included” or “Tarif promotionnel – Petit-déjeuner inclus”.

You may have to click “See more offers” or “Voir plus d’offres” to view this promotional price.

Cancellation & Payment Policy:

Free cancellation is available up to 48 hours before check-in or as per your hotel confirmation email. Payment is due at the hotel upon check-in.

Room types and configurations may be limited, so we encourage early booking to secure your preferred option.

You will receive the hotel booking code in your conference registration email.

Hotel Booking Instructions

When booking your hotel room, please use the booking code in your conference registration email.

Please make sure to pick the correct room rate – “Promotional price – Breakfast Included” or “Tarif promotionnel – Petit-déjeuner inclus”.

You may have to click “See more offers” or “Voir plus d’offres” to view this promotional price.

Free parking is available to guests staying at the hotel who use our booking link or book direct with the hotel.

Families are welcome to participate in as much of the programme as they wish. However, families receiving financial aid are expected to attend all parts of the conference programme in order to receive reimbursement after the event.

The conference is casual and family-friendly. Comfortable clothing is recommended for the presentations and activities.  We recommend bringing a light layer or something warm, as air‑conditioned hotel spaces can sometimes feel a bit chilly.  You may also want comfortable walking shoes for the Worldwide Walk and for the Disneyland Paris days.

Connecting with other families is one of the most meaningful aspects of Brighter Hope Foundation conferences.  Throughout the weekend, there will be multiple opportunities to meet others who share similar experiences.  

In addition to the Meet & Greet Dinner and informal conversations during meals and activities, the conference will also include breakout discussion groups, which may include groups such as

  • Families impacted by ENPP1 Deficiency
  • Families impacted by ABCC6 Deficiency
  • Adult Patients

These conversations often become some of the most valuable and supportive parts of the conference experience.

Disneyland Paris offers a range of accessibility services for guests with disabilities and certain chronic health conditions. These services may include specialised access cards that can help reduce wait times for attractions, shows, and other experiences.

Two types of access cards may be available:

  • Priority Card – for guests with officially recognised disabilities, providing priority (but not immediate) access to attractions, shows, parades, and certain services.
  • Easy Access Card – for guests with certain long-term chronic conditions, which may provide scheduled return times for attractions 

Families who believe they may qualify for one of these services should review the official accessibility information provided by Disneyland Paris.

Accessibility Information:

https://www.disneylandparis.com/en-usd/guest-services/accessibility-at-disneylandparis/

Please note that all accessibility arrangements must be made directly with Disneyland Paris and are the sole responsibility of each family. Brighter Hope Foundation cannot arrange these services. 

Families are strongly encouraged to review the requirements well in advance of their trip to ensure they have the proper documentation and understand the application process before arriving at the parks. 

Click here to join. Please answer all the membership questions.

If you have additional questions about the conference, please contact us at info@brighterhopefoundation.org. 

REGISTER FOR THE CONFERENCE
BOOK YOUR HOTEL STAY
MAKE A DONATION

Questions? Contact us at info@brighterhopefoundation.org.

All You Need To Know About The Patient & Family Conference:

CONFERENCE: HOME PAGE
CONFERENCE: HOTEL
CONFERENCE: PROGRAMME
CONFERENCE: PRESENTERS
CONFERENCE: ATTENDEE INFO
CONFERENCE: KIDS & TEENS ACTIVITIES
CONFERENCE: TRAVEL & GETTING TO THE CONFERENCE
CONFERENCE: DISNEYLAND PARIS VISIT
WORLDWIDE WALK 2026