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Alopecia Areata Patient Voices in Research

Posted by Christie Plummer

December 6, 2019 at 6:00 PM

Do we truly know what it's like to live with skin disease?

Your voices on alopecia areata life make the difference!

Dear BGDL community members,

You are stellar! You tell us what matters to you. Your alopecia areata experiences are the backbone of Bald Girls Do Lunch. We cherish the thousands of emails, posts and conversations you've made with us since 2007.*

Here's what you've done:

•  You said it like it is in your comments to the FDA.
•  You wrote that "this is what helps me feel like myself as I head out the door every day."
•  You shared that the "roller-coaster of emotions, the stigma and shame of AA consumes my life."

We can’t thank you enough for giving proof of alopecia hurdles. Your brute honesty benefits us all. You have made it easier for those so alone with their alopecia.

You share the struggles and successes over lunch. While more people than ever request Bald Girls lunches, our wait list grows. 

DONATE TO BRING ALOPECIA VOICES TO LUNCH!

What is 'The Patient Voice'?

European Researchers for GRIDD at International Alliance of Dermatology Patient Organizations conference.
European Researchers for GRIDD at International Alliance of Dermatology Patient Organizations conference.

There is a growing movement in medical research to include 'the patient voice'. It's about inserting the patient perspective on the impact of their condition.

Today, how lucky we are! We're living at a time when patients' daily lives have a rising role in clinical research.

That's where you come in! Because of your 'patient voice' sincerity with Bald Girls Do Lunch, we learn from you. You tell us what matters to you as an individual and as a community member. We couldn't do what we do without hearing from you!

Voices Amplified in 2019

The Bald Girls Do Lunch organization jumped in for a superb patient leader opportunity in spring, 2019.

Founder, Thea Chassin, contributed directly in the first Patient Leader Workshop for GRIDD.
— Global Research on the Impact of Dermatological Disease.

Thea Chassin (middle) with two European researchers for GRIDD: Global Research on the Impact of Dermatological Disease." Ms Chassin is the founder and CEO of Bald Girls Do Lunch.
Thea Chassin (middle) with two European researchers for GRIDD: Global Research on the Impact of Dermatological Disease."

"The day-long collaboration with my fellow patient leaders of skin diseases was electric" recalls Chassin.

"The candor and sheer guts of the BGDL community was top of my mind. Dozens of skin diseases were represented, many as new to me as AA was new to them. It was beyond gratifying as we took a 360 view on patients' lives: social, financial, biological and psychological impacts," Chassin said.

How You've Helped GRIDD

"I credit our BGDL community for the way our organization speaks for them. It's the collective 'patient voice' that tells us what impacts every sphere of their lives, especially at BGDL Lunches."

  • You get the credit for giving us a deep understanding of real-world AA life.
  • You make the world a better place for dermatology patients when AA voices speak.
  • You can be proud that your voice of AA life at lunch or online with BGDL goes far.

Bald Girls lunches encourage women to voice what matters to them most in a caring space. It only costs $35 for a 3-hour BGDL lunch for a woman in need.

DONATE TO BRING ALOPECIA VOICES TO LUNCH!

 

* As a patient focused organization we learn from your experiences. We never ever share personal information in any form without your permission.

More about GRIDD
  • GRIDD is the first global dermatology research project that is patient-initiated and patient-led. GRIDD is using the patient perspective on the real impact of skin diseases. GRIDD stands for Global Research on the Impact of Dermatological Disease.
  • Research teams are working on GRIDD at Cardiff University and the University of Hamburg.
  • GRIDD aims to change the frequent global perception that skin diseases have an insignificant impact on daily life.
  • GRIDD data aims to give medical and institutional decision-makers validated information. The research focus is to get clarity on the burden of skin diseases on patients and care-givers.

 

Topics: coping with alopecia, women living with alopecia, alopecia medical resources, talking about alopecia, alopecia awareness, alopecia research