Congenital Adrenal Hyperplasia Insights

An Extension Study to Evaluate Safety and Efficacy in Participants Treated With CRN04894

Congenital Adrenal Hyperplasia Insights

Wed, 16 Apr 2025 18:00:00 +0000

Latest Research

Research on Congenital Adrenal Hyperplasia (CAH) highlights the impact of hormonal imbalances on cardiovascular health. Glucocorticoids regulate stress and metabolism, while hyperandrogenism involves an excess of male sex hormones. These imbalances can lead to cardiovascular issues, making their management crucial for preventing such problems in CAH patients.

Understanding the relationship between hormonal imbalances and cardiovascular health can improve treatment strategies for CAH, potentially reducing long-term health risks. This insight is important for developing effective management plans for individuals with CAH, as noted by Çetin and Atar (2025).

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia

Natural History Study of Patients With Excess Androgen

A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia

Community News

CAH Support NetworkApr 11, 2025

Join us this June for the Inaugural Swing for CAH Golf Tournament in Johnson City, TN! Enjoy 9-holes of golf as we raise awareness for and support those living with CAH! You can learn more information about this event/register by visiting: https://caresfoundation.org/swing-for-cah/.

CAH Support NetworkApr 09, 2025

Tomorrow, April 10, 2025, there will be a support group meeting for Parents of CAH Children (Newborn-Age 5) at 9:00PM(ET) via Zoom. Please email support@caresfoundation.org if you are interested in attending.

CAH Support NetworkApr 08, 2025

TODAY IS THE FINAL DAY TO PURCHASE YOUR SEATS TO ATTEND THE 25TH ANNIVERSARY EVERYONE CARES GALA! Purchases must be made by no later than 11:30PM(ET) tonight, April 8, 2025.

Seats can be purchased by visiting: https://caresfoundation.org/25th-anniversary-everyone-cares-gala/

Upcoming Events

Congenital Adrenal Hyperplasia Insights

Wed, 09 Apr 2025 18:00:00 +0000

Latest Research

The recent study by Koganti et al.

investigates the STAR/STARD1 protein's role in congenital adrenal hyperplasia (CAH), focusing on how mutations in the STAR gene result in lipoid CAH.

This condition leads to a deficiency in steroid hormone production due to impaired cholesterol transport within mitochondria.

The findings indicate that understanding the mechanisms behind STAR mutations can shed light on the various clinical presentations of CAH, which often include hormonal imbalances and developmental challenges in affected individuals.

Furthermore, the research highlights the significance of early diagnosis and management of CAH to reduce long-term health complications associated with the disorder.

Effective treatment strategies are essential for enhancing the quality of life for patients diagnosed with this genetic condition.

Koganti (2025).

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

Community News

CAH Support NetworkApr 02, 2025

The CARES Foundation April 2025 Monthly Update is OUT NOW! In this update, you will find information on important events, research, community updates, and more!

Please visit: to view the full April 2025 Monthly Update.

CAH Support NetworkApr 04, 2025

The CARES Connections Spring 2025, Vol. 28 Newsletter is out now! Visit: to learn more about important research, upcoming events, and more information from our Community!

CAH Support NetworkApr 01, 2025

CARES Foundation and the Little Words Project are teaming up to bring 'warrior' bracelets to our community! These symbols represent your support of those battling to help improve their lives/the lives of those living with congenital adrenal hyperplasia.

Purchase your bracelets today to help support our community!

Warrior bracelets can be purchased at: https://www.littlewordsproject.com/products/giveback-warrior-4

Upcoming Events

APR

25th Anniversary Gala In Person CAH Support Network

A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia

Congenital Adrenal Hyperplasia Insights

Wed, 02 Apr 2025 18:00:00 +0000

Latest Research

Recent research highlights the role of congenital adrenal hyperplasia in disorders of sexual development, particularly in cases involving individuals with a 46,XX karyotype. This condition is noted as a relatively common autosomal recessive enzyme defect, which can lead to specific developmental issues Yıldırım (2025).

The findings suggest that congenital adrenal hyperplasia is significant in understanding certain syndromes related to sexual development disorders. While the specific details of the study are not provided, it underscores the importance of considering congenital adrenal hyperplasia in the context of these disorders. This research contributes to a broader understanding of genetic factors influencing sexual development.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

Dexamethasone and Pregnancy: Maternal Effects

Investigation of the Etiology of Hypertension and Endothelial Damage in Patients with Cytochrome P450 Oxidoreductase Deficiency

Baby Detect : Genomic Newborn Screening

Community News

CAH Support NetworkApr 01, 2025

CAH Support NetworkMar 27, 2025

Support CARES Foundation this weekend by purchasing a dozen Original Glazed donuts from Krispy Kreme! 50% of your order between now and May 22, 2025, will be donated back to CARES Foundation when it is placed through our fundraising page, copied below:

Purchase my donuts today: https://www.groupraise.com/offer-campaigns/56423?utm_source=offers_promo&utm_medium=social&utm_campaign=krispykreme&utm_content=a

CAH Support NetworkMar 28, 2025

Share Your Experiences With CAH and Help Others

Pinpoint Patient Recruiting, a market research recruitment company, is looking for adults (ages 18+) who have CAH, or parents of children who have CAH, to participate in various virtual market research studies throughout the year. Researchers will be conducting online surveys and interviews in order to better understand your experiences and opinions.

Those who qualify for and participate in a study will receive $50 or more as a thank you for their time. All information and responses will remain confidential. The research opportunities are sponsored by pharmaceutical companies. No medication will be given or tested.

Interested?

To see if you qualify for these studies or to get more information, please visit www.pinpointpatientrecruiting.com/cah-survey-cares or contact Jenny Fowle at jenny@pinpointpatientrecruiting.com.

Upcoming Events

www.allmyhealth.io/reports

Congenital Adrenal Hyperplasia Insights

Wed, 19 Mar 2025 18:00:00 +0000

Introduction to Gene Therapy - out now!

We're thrilled to announce the launch of the first guide in our gene & cell therapy series.

Read it for free here:

Stay tuned for next week when we will launch the next report in the series.

Would you like to sponsor the next report in the series?

Enquire here

Latest Research

In the treatment of congenital adrenal hyperplasia (CAH), Neumann et al. (2025) discuss the use of modified release hydrocortisone in adolescents. Traditional immediate release hydrocortisone doesn't align well with the body's natural cortisol patterns, often requiring doses that are higher than what's naturally occurring, and must be taken multiple times a day. This can make it hard to get the dosage right and can lead to unwanted side effects.

The experts suggest using Hydrocortisone Modified Release Capsules, which have been shown to be effective in adults and are now approved for use in adolescents 12 years and older. This new formulation releases the medication in a way that better mimics the body's own rhythms, potentially improving treatment outcomes. The article outlines dosing strategies, monitoring protocols, and emphasizes the importance of gathering more data on the effectiveness of this treatment in younger patients.

Clinical Trials

This is a list of upcoming or ongoing clinical trials that are actively recruiting and have been listed or updated in the last two weeks:

A Study of a Virtual Education-Based Transition Intervention to Improve Transition Readiness in Adolescent and Young Adults With Congenital Adrenal Hyperplasia

Natural History Study of Patients With Excess Androgen

Community News

CAH Support NetworkMar 17, 2025

Are you interested in being a guest on CAH Pulse? If so, please contact dina@caresfoundation.org for more information.

You can catch up on past episodes of the CAH Pulse Podcast by visiting: https://cahpulse.podbean.com/ or scanning the QR code in this image.

CAH Support NetworkMar 18, 2025

Are you interested in applying for the #RAREis Scholarship? Please visit rarescholarship.org to learn more information about this opportunity. Applications close April 28, 2025 at 2:00PM(ET).

CAH Support NetworkMar 12, 2025

We encourage you to take a moment to view this message from one of our Honorees for this year's Gala, Lesley Holroyd, RN. You can access our Gala Webpage at: https://caresfoundation.org/25th-anniversary-everyone-cares-gala/ to view Lesley's Honoree Profile and learn more about this year's event!

We look forward to seeing you there!

Congenital Adrenal Hyperplasia Insights

Fri, 07 Mar 2025 12:00:00 +0000

Don't miss out!

Thank you to everyone who has completed our form and sent in questions they would like us to answer, and to those who would like to partner with us in sponsoring, contributing and distributing the cell and gene therapy guide.

We would love to hear from more of you in this community and still have some partner slots left so please reach out asap by clicking below👇!

Apply now: feature your voice in our cell & gene therapy series

Cell and gene therapies are transforming rare disease treatment, offering new hope where options were once limited. But how do they work, and what choices exist for your community?

We're launching a special content series to help our 15k+ readers navigate this evolving landscape – and we need your voice!

Be part of the conversation, whether you are:

• A patient or carer

• A patient support group

• Developing cell & gene therapies

• Administering cell & gene therapies

📅 Enquiries close: March 12

Let's educate, advocate and drive change together.

Congenital Adrenal Hyperplasia Insights

Wed, 05 Mar 2025 18:00:00 +0000

HealthSpotlight is now AllMyHealth!

Read all about our exciting merger here.

Apply now: feature your voice in our cell & gene therapy series

Cell and gene therapies are transforming rare disease treatment, offering new hope where options were once limited. But how do they work, and what choices exist for your community?

We're launching a special content series to help our 15k+ readers navigate this evolving landscape – and we need your voice!

Be part of the conversation, whether you are:

• A patient or carer

• A patient support group

• Developing cell & gene therapies

• Administering cell & gene therapies

📅 Enquiries close: March 12

Let's educate, advocate and drive change together.

Latest Research

In a study by Krishnan et al. (2025), researchers examined the long-term outcomes of feminizing genitoplasty in patients with congenital adrenal hyperplasia (CAH). The retrospective study included 43 patients who had undergone the procedure, most before the age of one. Findings revealed that 63% of these patients did not require further surgeries after the initial reconstruction. However, among the post-menarchal patients, there were instances of vaginal stenosis and menstrual obstruction, leading to additional surgeries. The study also found that screening examination under anesthesia (sEUA) for asymptomatic patients might be unnecessary, as it rarely led to further surgery recommendations. The research highlighted the importance of continued observation and uniform gynecologic care to better understand the outcomes of feminizing genitoplasty in CAH patients.

Despite the majority not needing additional surgeries, some patients did experience complications such as vaginal stenosis, menstrual obstruction, and dyspareunia (painful sexual intercourse). The study by Krishnan et al. suggests that sEUA could be reserved for symptomatic patients due to the low rate of abnormal findings in asymptomatic individuals. The research underscores the need for more comprehensive follow-up and documentation to improve care for CAH patients after genitoplasty.

Community News

Living with CAHFeb 28, 2025

Join us for a meeting in London in June 2025! We'll be covering topics including new treatments, quality of life and health through the ages.

CAH Support NetworkFeb 27, 2025

We encourage you to learn more about how to be prepared in the event of an emergency, by visiting our webpage on the CARES website at: https://caresfoundation.org/be-prepared-in-an-emergency/

CAH Support NetworkFeb 27, 2025

Thank you to the Geletko Girls for sharing their story and advocacy efforts with us! Make sure to wear your blue jeans to celebrate rare genes tomorrow, February 28, 2025 as part of Rare Disease Day! Visit: https://caresfoundation.org/rare-disease-day-2025/ to learn more.

Upcoming Events

MAR

CAH Parents Support Group CAH Support Network Online

Click Here to Join Our Community

Join Our Waitlist

Congenital Adrenal Hyperplasia Insights

Wed, 19 Feb 2025 18:00:00 +0000

Latest Research

In their study, Cao et al. (2025) found that prenatal dexamethasone exposure (PDE) can lead to adrenal dysfunction in adult male offspring. This is due to an increase in the acetylation levels and expression of the enzyme CYP27A1, which is involved in bile acid production in the adrenal gland. The study showed that this increase in CYP27A1 leads to higher bile acid levels, causing stress to the endoplasmic reticulum (a cell structure where proteins are made) and impairing cell function.

Interestingly, the effects of PDE were reversed in female offspring. The researchers also discovered that treating male offspring with nilvadipine, a CYP27A1 inhibitor, after birth could reverse the morphological and functional damage to the adrenal gland caused by PDE. These findings suggest that the GR/SETBP1 signaling pathway plays a crucial role in the PDE-induced adrenal dysfunction observed in adult male offspring.

Upcoming Events

APR

25th Anniversary Gala CAH Support Network In Person

Click Here to Join Our Community

Join Our Waitlist

Congenital Adrenal Hyperplasia Insights

Thu, 06 Feb 2025 16:00:00 +0000

Latest Research

In their comprehensive review, Concolino & Falhammar (2025) delve into the genetics of Congenital Adrenal Hyperplasia (CAH) due to 21-Hydroxylase Deficiency (21OHD), which accounts for the majority of CAH cases. The disease is characterized by insufficient production of the 21-hydroxylase enzyme, crucial for cortisol and aldosterone synthesis, and is encoded by the CYP21A2 gene. The severity of CAH can vary significantly, ranging from a severe classic form to a milder nonclassic variant.

The authors highlight the complexity of diagnosing 21OHD at the molecular level, despite recent advancements in the field. Their review synthesizes information from a broad spectrum of sources, including original research and past literature, to present the latest developments and insights into the genetics and molecular diagnosis of 21OHD. Concolino and Falhammar's work underscores the ongoing challenges and new concepts emerging in the genetic understanding of this condition.

Community News

CAH Support NetworkJan 31, 2025

The CARES Foundation February 2025 Monthly Update is OUT NOW! In this update, you will find information on important events, research, community updates, and more! Please visit: https://caresfoundation.org/wp-content/uploads/2025/01/CARES-Update-February-2025-FINAL1.pdf to view the full February 2025 Monthly Update.

CAH Support NetworkJan 31, 2025

Help CARES Foundation celebrate our 25th Anniversary by making a lasting difference in our community! If you would like to make a donation, please visit: https://caresfoundation.app.neoncrm.com/forms/cares-25th-anniversary?campaignId=307 to learn more.

Upcoming Events

FEB

CAH Children Support Group CAH Support Network Online

APR

25th Anniversary Gala CAH Support Network In Person

FDA Approves First New Treatment for Classic Adrenal Disorder in 70 Years

Congenital Adrenal Hyperplasia Insights

Liam Ball — Thu, 23 Jan 2025 18:00:00 +0000

Latest Research

In a study by Sandy et al. (2025), the psychological impact of a congenital adrenal hyperplasia (CAH) diagnosis was found to be profound and long-lasting, affecting family planning decisions. Parents of children with CAH experienced symptoms of trauma, such as depression and anxiety, which influenced their consideration of pre-implantation genetic testing (PGT) to prevent another child with CAH. However, some families chose natural conception after weighing the day-to-day impact of CAH and the financial, physical, and emotional costs of PGT. The study emphasizes the need for healthcare professionals to be empathetic and well-informed about CAH to better support families.

In a separate study, Oberste et al. (2025) found that fetuses with congenital heart diseases (CHD) exhibited larger adrenal gland ratios compared to normal fetuses, suggesting elevated metabolic stress levels that could impact adrenal gland development.

Lastly, Miller (2025) reviews the role of the steroidogenic acute regulatory protein (StAR) in CAH, noting that while StAR is essential for rapid steroid production, there are StAR-independent pathways as well. The review highlights the need for further research on how StAR facilitates cholesterol import into mitochondria, a key step in steroidogenesis.

Weekly Spotlight - 09.01.25

Liam Ball — Thu, 09 Jan 2025 18:00:00 +0000

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Community

Share Your Story, Inspire Hope

Your journey can be a beacon of hope and a source of strength for others in our community. Together, we can build a stronger, more supportive community. Your story matters, and it deserves to be heard. Fill in this form to be featured.

Latest News

The FDA has approved the first new drug in 70 years for classic congenital adrenal hyperplasia, a genetic disorder that affects hormone production. The drug, called isturisa, helps regulate cortisol levels, reducing the need for multiple daily medications and potentially improving quality of life for those with the condition.

New Study Highlights Traditional Glucocorticoid Treatment in Classic Congenital Adrenal Hyperplasia Patients

Neurocrine Biosciences has published a study in the Expert Review of Endocrinology & Metabolism on traditional glucocorticoid treatment for classic congenital adrenal hyperplasia, highlighting its effects and implications for patients with this condition. The research aims to improve treatment outcomes and management strategies.

Neurocrine Biosciences Develops New Treatments for Rare Hormonal Disorder

Neurocrine Biosciences is researching new treatments for congenital adrenal hyperplasia (CAH), a genetic disorder affecting adrenal gland function. The company aims to develop more effective and convenient therapies to manage CAH symptoms and improve patients' quality of life. These potential treatments are in various stages of clinical trials.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 19.12.24

Liam Ball — Thu, 19 Dec 2024 18:00:00 +0000

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Share Your Story, Inspire Hope

Latest News

First New Drug for Rare Hormonal Disorder in 70 Years Approved

Neurocrine's Cressity is the first new drug approved for congenital adrenal hyperplasia (CAH) in 70 years, offering a significant advancement in treatment. It targets the underlying hormonal imbalance, providing an alternative to traditional steroid therapies and potentially improving quality of life for CAH patients.

FDA Approves Crinecerfont for Rare Hormonal Disorder After Successful Phase 3 Trial

Dr. Richard J. Auchus discusses a pivotal Phase 3 trial that led to the FDA approval of crinecerfont, a treatment for congenital adrenal hyperplasia. The trial showed crinecerfont's effectiveness in reducing androgen levels, improving symptoms and quality of life for patients with this condition.

Breakthrough Therapy for Rare Hormonal Disorder Shows Promise in 2024 Studies

Experts discuss a new breakthrough therapy for congenital adrenal hyperplasia, highlighting the potential of a novel treatment that could significantly improve patient outcomes. Dr. Richard Auchus, MD, PhD, shares insights on this innovative approach and its implications for managing the condition.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 12.12.24

Liam Ball — Thu, 12 Dec 2024 18:00:00 +0000

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Share Your Story, Inspire Hope

Latest News

Spruce Biosciences Discontinues Tildacerfont Trials Following Efficiency Changes

Spruce Biosciences announced the discontinuation of its clinical trials for tildacerfont, a potential treatment for congenital adrenal hyperplasia (CAH), after the CAHmelia-204 and CAHptain-205 studies failed to meet primary efficacy endpoints. The CAHmelia-204 trial in adult CAH patients showed only a minimal placebo-adjusted reduction of 0.7mg in daily glucocorticoid dose, which was not statistically significant. Despite the setback, the company noted that the trials provided valuable safety and exposure response data.

The CAHptain-205 study, which included both adult and pediatric patients, suggested that higher doses and more frequent dosing might be necessary for efficacy in CAH treatment. As a result, Spruce Biosciences will be winding down its investment in tildacerfont and evaluating strategic options to conserve financial resources. CEO Javier Szwarcberg emphasized the company's commitment to addressing diseases with serious unmet medical needs, while acknowledging the challenges encountered in these clinical trials.

New Clinical Trials for CAH Gain EMA Approval in 2024

The European Medicines Agency (EMA) is actively supervising multiple clinical trials in 2024, targeting the development of innovative treatments for congenital adrenal hyperplasia (CAH). These trials aim to advance therapeutic options, focusing on enhancing symptom management and improving the overall quality of life for individuals living with CAH.

By supporting the research of new therapies, the EMA highlights the ongoing commitment to addressing the unmet needs in CAH care. These efforts bring renewed optimism for breakthroughs that could provide more effective and tailored solutions, ultimately transforming patient outcomes in the years ahead.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 27.11.24

Liam Ball — Wed, 27 Nov 2024 18:00:00 +0000

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Anastrozole Boosts Height in Children with Adrenal Disorder

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

Latest News

Anastrozole, a medication typically used for breast cancer, has been found to increase height in children with congenital adrenal hyperplasia (CAH) by reducing androgen levels, which can help manage growth issues associated with the condition. This treatment shows promise in improving the quality of life for these children.

FDA Approves BridgeBio Pharma's Attr-CM Treatment, Atrurby (Acoramidis) for Rare Heart Condition

BridgeBio Pharma has received FDA approval for ATRUBY (acoramidis), a treatment for transthyretin amyloid cardiomyopathy (ATTR-CM). This approval highlights advancements in rare disease treatments from BridgeBio Pharma, which could inspire hope for similar breakthroughs in other conditions which they cover, such as congenital adrenal hyperplasia.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 21.11.24

Liam Ball — Thu, 21 Nov 2024 18:00:00 +0000

Community

Anastrozole Enhances Growth in Children with Adrenal Disorder

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

Latest News

The article discusses how the medication anastrozole can help improve growth potential in children with congenital adrenal hyperplasia (CAH). Anastrozole, typically used for breast cancer, has been found to reduce excess androgen levels in CAH patients, leading to better growth outcomes and potentially avoiding the need for growth hormone therapy.

New Lab in Nabarangpur to Screen Pregnant Women and Newborns for Genetic Disorders

A new lab in Nabarangpur will screen pregnant women and newborns for genetic disorders, including congenital adrenal hyperplasia. The lab aims to early detect and manage such conditions, improving health outcomes for affected individuals and their families. This initiative is part of a broader effort to enhance genetic disorder diagnosis and treatment in the region.

New Treatment Strategies for Patients with Adrenal Insufficiency Show Promising Outcomes in Clinical Trials.

This article discusses the management and treatment of CAH, a genetic disorder affecting adrenal gland function. It highlights new guidelines and therapies aimed at improving the quality of life for individuals with CAH, including hormonal treatments and surgical interventions. The focus is on personalized care to address the unique needs of each patient.

Innovation in Treatment Strategies Improve Outcomes in Patients with Adrenal Disorder

This article discusses a study on the management of CAH, a genetic disorder affecting adrenal gland function. It explores new treatment strategies and their impact on patients' quality of life, highlighting the importance of personalized care for those with CAH. The study aims to improve long-term outcomes for individuals with this condition.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 14.11.24

Liam Ball — Thu, 14 Nov 2024 18:00:00 +0000

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Anastrozole Enhances Height in Children with Congenital Adrenal Hyperplasia

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

In the News

Anastrozole shows promise in improving height outcomes for children with congenital adrenal hyperplasia (CAH) due to 21-OHD. By slowing bone maturation, it enhances predicted adult height. This supportive treatment could be a valuable addition for children with advanced bone age, offering hope for better growth prospects.

Primary Adrenal Insufficiency in Children: Insights from Spanish Hospitals

The study on primary adrenal insufficiency in children across five Spanish hospitals highlights the importance of early diagnosis and treatment. It identifies various causes, including X-linked adrenoleukodystrophy and autoimmune adrenalitis. Symptoms like asthenia and hyperpigmentation are common, and timely management can prevent life-threatening adrenal crises.

Adrenal Adenoma Mimicking Non-Classical 21-Hydroxylase Deficiency

The article discusses adrenal adenomas secreting 17-hydroxyprogesterone, which can mimic non-classical 21-hydroxylase deficiency, leading to potential misdiagnosis. It highlights the importance of recognising these rare benign tumours in adrenal steroidogenesis, ensuring accurate diagnosis and treatment, and providing hope for affected individuals through improved understanding and care.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 07.11.24

Liam Ball — Thu, 07 Nov 2024 18:00:00 +0000

Community

Understanding 17-Hydroxylase Deficiency and Its Impact on CAH

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

In the News

PatientsLikeMe provides insights for individuals with 17-hydroxylase deficiency, a rare genetic factor in congenital adrenal hyperplasia (CAH). This condition impacts hormone production, presenting health challenges. Through proper diagnosis and treatment, individuals can manage symptoms, improve quality of life, and benefit from community support.

Supporting Adrenal Health Through Diet for CAH Patients

Diet plays a key role in managing CAH symptoms. Balanced intake of proteins, complex carbs, healthy fats, and essential vitamins is vital for adrenal health. Patients are encouraged to avoid refined sugars and caffeine, and maintain hydration. PatientsLikeMe offers a community for tracking health and making informed dietary decisions.

Understanding Bone Health in Congenital Adrenal Hyperplasia Patients

CAH patients face difficulties maintaining bone health due to hormonal imbalances and treatment with glucocorticoids. PatientsLikeMe provides resources to address these risks through diet, exercise, and medical guidance. Proactive care can help prevent osteoporosis and fractures, ensuring a healthier life.

Managing Hirsutism in CAH: Empowering Solutions for a Confident Life

Hirsutism, or excessive hair growth, affects many women with CAH due to hormonal imbalances. Management includes medical treatments, hair removal, and emotional support. PatientsLikeMe’s community offers a platform for connection and shared experiences, empowering individuals to find effective solutions for this condition.

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 31.10.24

Liam Ball — Thu, 31 Oct 2024 18:00:00 +0000

Ramsgate Parents Advocate for School Training in Life-Saving Medication

In the News

Ramsgate parents Leah and Louis campaign for school staff training to administer life-saving medication for their children, Jaxon and Annie, who have congenital adrenal hyperplasia. They seek community nurse support to ensure school safety, emphasising the importance of immediate care during emergencies. Their petition has 262 signatures.

University of Sydney offers scholarship for intersex health research

The University of Sydney offers a $30,000 scholarship for PhD research on intersex health, focusing on bioethics and health law. This initiative supports the Interconnect Health Research project, aiming to improve healthcare for individuals with innate variations of sex characteristics, promoting ethical and equitable access to care.

Spruce Biosciences to Present at Healthcare Innovation Conference

Spruce Biosciences, a biopharmaceutical company, will present at the Guggenheim Securities Healthcare Innovation Conference on 11 November 2024. CEO Javier Szwarcberg will discuss their novel therapies for endocrine and neurological disorders. The presentation will be available via live webcast and archived for 90 days.

Community

Fill in the form to share your experiences and any challenges you’ve faced living with your condition, for a chance to be featured in one of our weekly newsletters!

Health Spotlight’s Congenital Adrenal Hyperplasia is a Contentive publication in the Healthcare division

Weekly Spotlight - 24.10.24

Liam Ball — Thu, 24 Oct 2024 17:00:00 +0000