SAVE this DATE
INFORM 2018 will be held on September 2nd and 3rd
in Athens Greece preceding the SSIEM.
Registration will open in January
Children’s Hospital of Pittsburgh/UPMC - Medical Genetics - One Children's Hospital Drive
Faculty Pavilion 1st Floor - 4401 Penn Avenue - Pittsburgh, PA 15224
Keith McIntire - Coordinator, INFORM - firstname.lastname@example.org
International Network for Fatty Acid Oxidation Research and Management
Patient Advocacy Summit:
• The individual must be living with or caring for someone living with LC-FAOD of any age
who is articulate and comfortable with participating in group discussions.
• Participants who have experience with the following LC-FAOD conditions would be
ideal for this meeting:
* Carnitine Palmitoyltransferase (CPT I or CPT II) Deficiency
* Very Long Chain Acyl-CoA Dehydrogenase (VLCAD) Deficiency
* Long-chain 3-hydroxy-acyl-CoA Dehydrogenase (LCHAD) Deficiency
* Trifunctional Protein (TFP) Deficiency
* Carnitine-acylcarnitine translocase (CACT) deficiency
* We would like to hear your Thoughts and feelings related to your LC-FAOD journey
and areas of unmet need within the community. This will help us better understand
the needs of the LC-FAOD patient community and gain a deeper understanding
of how best to communicate and work with the community. The meeting will also
provide participants an opportunity to offer feedback about programs being
developed for the LC-FAOD community. There will be a few representatives from Ultragenyx at the meeting. This Patient Advocacy Summit is not related to participation in any clinical trial.
• Only minimal information will be shared with Ultragenyx from those people
who express interest in moving forward with attending the meeting and agree to allow their information to be shared. Participants must be well enough and available to travel
safely to Nashville, Tennessee on May 20, 2017. All travel will be arranged and travel
expenses covered for participants by Ultragenyx.
• Contact Anna Cunningham at Snow Companies at:
email@example.com or 757-707-5683.
Please note that participation is limited and not all interested candidates may
be able to participate.
Ultragenyx Pharmaceutical Inc. has 3 current opportunities for FAOD patients and caregivers to provide feedback about their experiences.
Telephone research study:
* The purpose of the study is to explore the patient and caregiver experience of FAOD.
The research study is being conducted by a company called Adelphi Values on behalf
* As part of the study, Adelphi Values is conducting 60 minute interviews with patients
and caregivers about their experience with LC-FAOD. This interview will be conducted
via telephone or Skype at a time convenient for the patient.
* All information provided during the study will be treated confidentially and will
be kept anonymous.
* Participation is optional. If your patients or their caregivers would like to take
part or if they would like any further information about the study, please have
them contact Bryony Brookes at Adelphi Values at: firstname.lastname@example.org
Telephone: 617-720-0001 / Fax: +44 (0)1625-577-328