congenital adrenal hyperplasia

📅 Lunch and Learn, Los Angeles California

MaryO Interviews, Meetings and Conferences , , , , ,

Adrenal Insufficiency United’s Lunch & Learn Events are one day mini-conferences located in different cities in the USA. We find great local speakers to lead sessions and give presentations about issues affecting those with adrenal insufficiency. These one day events will be packed full of opportunities giving attendees more chances to ask questions, share their own experiences and network with fellow members of the community.

Los Angeles California

Where: Glendale Embassy Suites by Hilton: 800 North Central Ave, Glendale, CA

When: Saturday May 3rd    9:00 a.m – 4:00 p.m.

Costs: Early Bird Registration $50 per person (through April 1st)

Parking: Included in early bird registration or $12 per vehicle after April 1st

Speakers Include: Dr. Mimi Kim from CHLA, Anat Benshlomo from Cedars-Sinai, Dr. Run Yu from UCLA, Brenda Manzanarez a clinical dietician at CHLA

Schedule & Topics

We are still finalizing our schedule so some time changes may occur. 

8:30 a.m. Check in and networking

9:00 a.m. – 10:30 a.m.  Session on Adrenal Insufficiency and Cognition

10:45 – 12:00  Session on Stress Dosing, Pre-Crisis and Crisis

12:00 – 1:00 Lunch

1: 15 p.m. – 4:00 p.m.      Afternoon Break Out Group Proposed Topics thus far:

  • Injection Training
  • Nutrition and adrenal insufficiency
  • A breakout on Congenital Adrenal Hyperplasia

SIGN UP TO JOIN US! Los Angeles

Rare Patient Voice Current Studies

MaryO Can You Help?, What do you think? , , , ,

Here’s your chance to make your voice heard on your health Issues.

We have hundreds of studies open for patients and caregivers! Some of the studies we are working to fill immediately are listed below.

1. If you are already a member of Rare Patient Voice and want to be considered for a study listed below, please contact study.inquiries@rarepatientvoice.com

2. If you are NOT a member, please click here to complete the sign-up process and include all medical conditions to be considered for one or more of the studies below and any other relevant studies.

Please feel free to share this page with friends or family who might be interested!

United States

Congenital Adrenal Hyperplasia (CAH) patients United States
This is a 5-minute survey for a medical history platform, compensation is a $25 gift card

Crohn’s Disease, Diabetes, Psoriasis, Psoriatic Arthritis, Rheumatoid Arthritis, Ulcerative Colitis caregivers of children in Philadelphia, PA United States
75-minute in-person interviews, compensation is $225

Crohn’s Disease Male Non-Caucasian Patients United States
90-minute web-assisted phone interview, compensation is $175 ($150 for the interview and $25 for confirmation of diagnosis)

Crohn’s Disease, Ulcerative Colitis patients United States
15-minute online survey, compensation is $30

Growth Hormone Deficiency (GHD), Idiopathic Short Stature (ISS), Prader-Willi Syndrome (PWS), Small for Gestational Age (SGA), Turner Syndrome patients or caregivers in Boston, Charlotte, Raleigh, and Orlando United States
3-hour in-person interview

Migraine patients United States
Online surveys over a 6-10 week period, compensation is $325 to $585

Osteoporosis/Osteopenia patients who currently use or have used Forteo United States
60-minute in-person interview, compensation is $180

United Kingdom

Neuroendocrine Cancer (NET) patients United Kingdom
45-60 minute web-assisted phone interview, compensation is 50 GBP

Frequently Asked Questions
Why sign up with Rare Patient Voice?
Who knows better than you about your journey and experiences? We connect you with researchers who are developing products and services which can help you and others with your condition. These researchers need patient input so that they develop products and services that have a meaningful impact on patients’ lives.How will I be paid?
You will earn $120 per hour for participating in studies. We pay by check to ensure patients/family caregivers can use their compensation in any way they wish, and now provide the option for patients/family caregivers to sign up for electronic payments.

About Rare Patient Voice
Rare Patient Voice connects patients and caregivers with researchers who are developing products and services to help you and others with your condition. RPV has paid patients and family caregivers over $13 million dollars since 2013 for participating in research studies.

❓Clinical Trial: Congenital Adrenal Hyperplasia (CAH)

MaryO Uncategorized , , , , , , ,

The CAHmelia clinical trials are exploring a new investigational treatment for classic CAH.

CAHmelia 203 and CAHmelia 204 are clinical trials to test tildacerfont in adults with classic CAH, which may offer you and your loved ones hope of a brighter future – one where you may not have to choose between symptom management and long-term health.
Tildacerfont is a new type of oral, once-daily investigational treatment â€“ one that is not a steroid â€“ that is currently being tested in adults with classic CAH. By reducing the amount of androgens your body makes, tildacerfont may improve your classic CAH symptoms.
This investigational treatment will not replace your steroid treatment but may allow you to manage your disease with lower amounts of steroids at normal or near-normal doses.

Who can take part in this trial? You may be able to take part if you:Are at least 18 years of ageHave a confirmed diagnosis of classic CAH due to 21-OH deficiencyHave been on the same daily dose of steroids (GCs and/or mineralocorticoids) for at least 1 month before starting the trialBoth trials are now open for enrollment.
Tildacerfont is an investigational treatment not authorized for use in people outside the clinical trial.
For more information, go to: clarahealth.com/studies/cahmelia

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