Gene Therapy Support Network

Please join us if you are a current gene therapy patient or are an eligible patient considering gene therapy.

The goal of the Gene Therapy Support Network is to guide individuals in addressing potential fears, guilt, and concerns associated with embracing this treatment and its impact, before, during and after gene therapy.

Emotional support and confident health literacy is essential for individuals to make the best choice for their overall health when considering gene therapy as the next innovation in hemophilia B treatment. 

CHB is establishing a support network dedicated to helping individuals navigate this emotional decision.

"Is using a gene therapy safe? Is the inactivated viral vector encompassing a gene variant of Factor IX safe? What will it be like to not be hemophilic anymore? Who will I be? Will I still be a member of the community when my factor level is normal?"

"In the tight-knit bleeding disorders community how will recipients cope with potential "survivor's guilt"? What will it feel like when there are friends and loved ones who cannot use this treatment and others can? Is there anyone I can talk to about this?"

SUPPORT NETWORK INCLUDES:

  • Bi-monthly Gene Therapy Community Rap sessions
  • Personalized One-on-One Counseling for all participants
  • Couples and Career counseling preparing for transitions surrounding the life-changing event
  • Quarterly published reports offering expert guidance addressing inquiries and updates about treatment

GENE THERAPY COMMUNITY RAP SESSIONS:
Each meeting will begin with answering any questions attendees have about the program. Immediately to follow will be a rap session led by a community member. 

Meal vouchers will be provided for attendees.

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Email *
Rap Sessions (please select all you plan to attend) *
Required
Would you need translation services in order to participate?
 *
¿Necesitaría servicios de traducción para participar?
First Name *
Last Name *
Apellido
Age *
Edad
Phone Number *
Número de teléfono
State *
Estado
You are currently: *
En este momento estás:
Please share in detail what you would you be seeking from this as a participant. What specific topics, questions, concerns, or types of resources are you hoping to gain from the support network?
Por favor, comparta en detalle lo que usted buscaría de esto como participante. ¿Qué temas específicos, preguntas, preocupaciones o tipos de recursos espera obtener de la red de apoyo?
Please confirm your agreement to keep all discussions in this safe, private space strictly confidential, all members will sign a confidentiality agreement required for joining.
 *
Por favor, confirme su acuerdo para mantener todas las discusiones en este espacio seguro y privado estrictamente confidencial, todos los miembros firmarán un acuerdo de confidencialidad requerido para unirse.
Please share any additional comments, questions, or concerns. *
Por favor, comparta cualquier comentario, pregunta o preocupación adicional.
Meal voucher preference *
Preferencia de vale de comida
Next Steps // Próximos pasos
A member of the CHB team will be reviewing all applications and will be in touch to confirm your participation.

Please confirm the contact information provided is accurate and be prepared to answer any follow up emails or calls. 

A copy of your responses will be emailed to the address you provided.
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