Interested in participating in research studies on hemophilia, VWD, and other bleeding disorders? We’ll periodically post opportunities here.


The Henne Group is a research organization based in San Francisco. We are looking for individuals interested in joining our panel and participate in future research projects about their experience living with Hemophilia.

Call us now: 415-348- 2933 or access http://bit.ly/HEMOPHILIA_STUDY


A pharmaceutical/biotech company is in the process of developing a new potential hemophilia A therapy and will be hosting a small Patient/Caregiver Advisory Board meeting on November 10 in Orlando, Florida.

At this one-day meeting, patients and caregivers will be invited to share their experiences and challenges living with hemophilia A with factor VIII inhibitors and their treatment options.

The feedback gathered from participants will help inform how the company should develop and provide education and information to the community.

Reasonable travel expenses of invited participants will be reimbursed, and a small honoraria will be provided as compensation for their time and participation.

Participants must be:

  • Interested in participating
  • One or both of the following:

o   A person living with hemophilia A with an inhibitor aged 15 or greater

o   A caregiver of a person living with hemophilia A with an inhibitor

  • Must be willing and able to travel to Orlando, Florida, for a one-day meeting on November 10

All minors (under 18 years of age) must be accompanied by an adult caregiver (18 years or older).

Anyone interested in attending should contact Stephanie Proulx at Infusion Communications by sending a single reply to both email addresses below, or by calling her at 860-554-8876. Infusion Communications will then contact interested parties for further details.

stephanie.proulx@infusioncomms.com

infusioncomms@gmail.com


OPPORTUNITY FOR INDIVIDUALS LIVING WITH
SEVERE OR MODERATE HEMOPHILIA A

Spark Therapeutics, a late clinical-stage gene therapy company, together with the Patient Experience Project, a patient communications company, are working to identify people living with severe or moderate hemophilia A who may be interested in sharing their opinions and experiences with Spark Therapeutics.

At Spark, we aim to develop programs and communications with input from the community as our guiding force. One immediate opportunity may be participating in a Patient Advisory Board. Insights gained from this Patient Advisory Board will foster a better understanding and appreciation of the experiences of individuals living with severe or moderate hemophilia A, enabling Spark to better meet the needs of the community.

For the Patient Advisory Board opportunity, we are seeking individuals who:
 Are male, 18 years of age or older, and live in the United States
 Diagnosed with severe or moderate hemophilia A
(Severe: factor VIII levels less than 1% / moderate: factor VIII levels 1-5%)
 Have not had gene therapy/participated in a gene therapy clinical trial
 Are willing to share their opinions and experiences
 Be willing to travel to location of Patient Advisory Board for one-day in-person meeting

We are aiming to host the Patient Advisory Board on October 24th in Philadelphia, PA.

If you fit these criteria and may be interested, we would like to hear from you. To maintain confidentiality and privacy, individuals are asked to self-nominate for this opportunity by contacting Alissa Buhrmaster of The Patient Experience Project at 1-518-369-3231 or Alissa.Buhrmaster@the-pep.com. We welcome anyone interested to call with questions, simply reaching out will not convey any

commitment to participate!

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