2016 Patient-Doctor Conference Recap
CARF's 7th International Patient-Doctor Conference
Date: June 3-5, 2016
Location: New Orleans, Louisiana, USA
Program Chair: Nicole E. Rogers, MD
Host: CARF New Orleans Support Group
Periscope Conference Videos
- Botanical Treatments for Hair Loss, Nicole E. Rogers, MD
- So What’s Causing this Condition?, Jeff Donovan, MD, PhD
- Basics of Cicatricial Alopecia, Melissa Piliang, MD
Thank you CARF for an informative weekend presented in a fun, positive environment. Every dermatologist should be required to provide their alopecia patients with information on this organization! This organization and the weekend conference has been the answer to a huge prayer for me.
—SMH, Harrisonburg, VA
First of all, the conference was great because it felt good to know that the doctors thought enough to include the patients. Second, the information presented was diverse and easy to understand. It spoke to the wholeness approach of managing our conditions. Finally, it was a collegial atmosphere with individuals who were happy to share their stories and help others; all the while learning how to live with their condition and help themselves.
—BD from Illinois, a CCCA patient
LOTS of people did LOTS of work to make the conference such an informative, rewarding and supportive event for all who attended. When you have a disease that does not make the 'nightly news,' it means the world to know that you are not alone and that someone cares. Thank you for a constellation of efforts that made the event so successful and memorable.
I enjoyed meeting everyone and finally learning about my condition, which seems to be a combination. The best part was finding a doctor who would treat it after 9 years of trying to get help, finally getting a diagnosis, and then not being able to get a doctor to prescribe the recommended medications. Thank you, Dr. D!
—JN, Santa Fe, NM
I came here feeling like a caribou in the middle of a zebra herd – I left belonging to the CARF Family!
2014 Patient-Doctor Conference Recap
CARF's 6th International Patient-Doctor Conference was held April 4-6, 2014, in Chicago, Illinois, USA, hosted by Dr. Victoria Barbosa and the Chicago Support Group. The conference continues to grow with approximately 120 people attending, representing 3 countries and 28 states, with attendees coming from as far as the United Kingdom and Alaska.
The conference began with a warm reception hosted by the Chicago Support Group at local favorite Lucky Strike. Participants were able meet and greet old and new friends while enjoying appetizers in a relaxed atmosphere.
On Saturday morning leading experts presented a variety of talks covering many aspects of diagnosing, treating and living with cicatricial alopecia. These talks included an "Overview of Cicatricial Alopecia" by Amy McMichael, MD, and "The Work-up of Cicatricial Alopecia" by CARF Board of Directors member Jerry Shapiro, MD. "Medical and Surgical Treatment Options" was presented by CARF Founder Vera Price, MD, and Immediate Past-President of the International Society of Hair Restoration Surgery, Carlos Puig, DO. Maria Hordinsky, MD, and Daniel Groth presented an "Update on the Topical Gabapentin Study," and the morning concluded with talks on "Hair Care Products & Styling" by Jacqueline Tarrant, and "Wigs and Hair Piece Options" by Mette Menotti.
The afternoon continued with the ever popular Ask the Experts Panel, moderated by Lynne Goldberg, MD, with panelists: Victoria Barbosa, MD, MPH, MBA, Maria Colavincenzo, MD, Lady Dy, MD, Ingrid Roseborough, MD, and Jerry Shapiro, MD. One of the highlights of the weekend was when attendees had the opportunity to have "Coffee with an Expert" with small group table topics. Attendees enjoyed coffee and a snack while having an informal conversation with an expert in the topic of their choosing. Topics included Supporting My Loved One, Eek! My Eyebrows and Eyelashes, Men's Issues, Walking Away from Relaxers, disease specific tables, and more.
For the early Sunday morning risers, a yoga session was offered by Karen Payne. Express Yourself Support Groups then took place prior to the general session commencing. Ken Washenik, MD, PhD, conference emcee and CARF Board of Directors member began the Sunday morning talks with a "Research Update." The rest of the morning included a series of talks on how to care for one's whole self through integrative medicine. Talks included, "The Role of Integrative Medicine" by Dominic Patawaran, MD, "Nutrition and Inflammation" by Sharon P. Foley, PhD, RD, LDN, and "Acupuncture and Oriental Medicine" by Brendan Mattson, LAC, MSAOM. The concluding talk was given by psychiatrist Amanda Kleinman, MD, on "Tools for Stress Management." Concluding remarks were given by Board of Directors member, Mary Clay, MS.
Future issues of the CARF Communique newsletter will feature detailed write-ups from the conference. If you are not already signed-up to receive the newsletter, please do so today by clicking "Join CARF" in the bar to the right.
CARF extends sincere gratitude to the corporate supporters of the 6th International Patient-Doctor Conference.
2012 Patient-Doctor Conference Recap
The 2012 conference was a big success with 118 people in attendance – the highest attended patient conference in CARF's history.
Presentations by leading experts included an introduction to Cicatricial Alopecia by CARF Founder Vera H. Price, MD, FRCP(C). An explanation of the role of scalp biopsy in Cicatricial Alopecia by Lynne J. Goldberg, MD was then followed by the presentation of the medical and surgical treatments available for cicatricial alopecia by Valerie D. Callender, MD. Ken Washenik, MD, PhD informed updated attendees on what is new for Cicatricial Alopecia and then Victoria Barbosa, MD, MPH, MBA shared lessons and inspiration from the Chicago support group, where she serves as the physician leader.
Patient and physician attendees submitted questions for the important Ask the Experts Panel on Saturday afternoon. The panel energetically answered and debated questions about their individual practices on the diagnoses and treatment of the cicatricial alopecias.
The conference ended on a high note Sunday when Drs. Pamela G. Devaney and Rebecca Johnston shared tools for coping with Cicatricial Alopecia through hypnosis and the mind-body connection. Barbara Starr, NP shared tips on how to maximize your time in the office to make the most of each visit. Yolanda Lenzy, MD, MPH is clearly on fire for research and a cure, which she shared through her talk about her personal passion for treating those who are diagnosed with cicatricial alopecia.
Future issues of the CARF Communique newsletter will feature detailed write-ups from the conference. If you are not already signed-up to receive the newsletter, please do so today by visiting www.carfintl.org/contact-us.php
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CARF is the world's only voice for patients with cicatricial alopecia and we need your support. Please donate to CARF to support patients around the world impacted by scarring, inflammatory, permanent hair loss.
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