Share your Adrenal Crisis/Emergency Room Experience

If you or your child has experienced a recent adrenal crisis or emergency room visit, please share your story.

Specifically:

  • Whether a stress dose injection (e.g., Solu-Cortef) was given at home
  • Your experience with EMS providers (e.g., ambulance/first responders)
  • How the emergency room staff responded and treated the situation

Your feedback can help us identify areas for improvement in education, response times, support for families managing adrenal insufficiency, and can help raise awareness among healthcare providers and the broader community.

Please contact Dina@caresfoundation.org. Stories can be shared anonymously if you prefer. 

Some of the stories shared so far...

Click to see full Emergency Experience stories

Our Emergency Department Experience

“I had an absolutely eye-opening experience last year. My son just turned 2 in March. He has classic CAH. We live in a rural area, so I have to drive him 3 hours twice a year to see the pediatric endocrinologist (we have 2 additional appointments with the endo over video).

Last spring while he was at daycare, the provider got him up from a nap. His face was grey, his tongue or lip was bleeding, he was weak and shaky. He had been fine that morning, maybe a snotty nose, elevated temperature but no fever, etc. He was not obviously sick when I dropped him off.

She called an ambulance, then called me. Our town is very small, so I arrived right after the ambulance. I saw him, and he looked…sick. The grey had passed, he was mostly flushed at that point. He was lethargic, upset by the strangers of course. I informed the paramedics about the CAH and need for hydrocortisone. I let them take him to the hospital because I didn’t have a car seat in the car I had. I stopped at home to grab his hydrocortisone pills and the Solu-Cortef injection.

Because we live in a rural area and he is just a baby, the endocrinologist has us go to the ER anytime he needs an injection of Solu-Cortef. Typically, I would give the injection BEFORE going to the ER as instructed by the endo, but this time obviously we were admitted before I could do that.

What followed was a very frustrating and scary few hours that totally changed my trust in our hospital and our ability to get good care there. I felt like the ER doctors WEREN’T talking with the endocrinologist or aware of how to handle CAH patients. My son had been to the ER at least 3  times prior to this, and it was well documented that he has CAH. I asked if they had called the endo and if they were going to administer the Solu-Cortef. They apparently HAD talked to the endo, but no medication was being given. They were running tests. It had been well over an hour at this point, and I KNEW what my son needed was hydrocortisone.

I don’t remember if the daycare provider had told me that he’d vomited prior to the ambulance arrival, maybe she did. Either way, it was basically time for his afternoon dose, and I hoped that giving him his afternoon oral dose would mitigate the symptoms and get us on the right track. I told the ER doctors I was going to give him his regular dose, and they said fine. My son vomited it up within 10 minutes. I tried once more at least, and he vomited that up as well. Obviously if he vomits his oral medicine we absolutely have to give him the shot.

I called the endo myself (after-hours doctor, not his regular) and got this whole song and dance about how my son was technically under the care of the ER doctors and so they couldn’t give me any advice, they could only advise those doctors. I talked to the ER doctor and told them this is what the standard care is, we should give him the shot.

What ended up happening is that they said I could do whatever I felt was right. I’m not a doctor though, and nobody had any idea what was actually wrong with him at this point. They were determined to run tests before giving him anything (I assume). I felt absolutely awful, really scared that if I gave him his shot I might inadvertently make the situation worse. BUT I was also certain that his body NEEDS the hydrocortisone to prevent a crisis. I ended up administering the shot myself, without being directed to by his endo OR the ER actually administering it on their own. I had to use the medication we had personally, nothing was provided by the hospital. I gave him the shot about 2-3 hours after the daycare provider alerted me of his issues.

We were discharged shortly after. All the flu tests and whatever came back negative. They basically said keep watch on him and come back if he gets worse. He got better within a day or two–with proper stress dosing.

When I spoke to the endocrinologist months later he told me I had 100% done the correct thing and that I have to advocate for my son and threaten the ER if they don’t provide the care he needs. He literally said that to me, that I might need to THREATEN them. Do you understand how scary that is to hear? That these professionals that I typically trust to care for our health actually can’t be trusted, and in fact, might need to be scared in order to act? I don’t actually know what was said between the after hours endocrinologist and the ER, I don’t know why the ER didn’t immediately administer Solu-Cortef. As far as I understand, that is standard procedure for CAH patients.

The entire experience was horrible. I’m left not knowing why professionals who have medical training and who contacted the correct specialists did not provide the care I believed or was told that they should. I had no idea if what I was doing was actively making things worse or better, but no one explained why they WEREN’T doing it, and I had been told over and over that his body relies on this medication. I had seen it help (I’d had to give him the shot twice before) and the endocrinologist had assured me in the past that you should always fall on the side of giving the shot unnecessarily rather than NOT giving it when he needed it.

It was an awful experience. All the previous times we had been to the ER were fine; I had given him the shot and basically the ER just needed to take his blood for the endocrinologist and keep and eye on him to make sure he didn’t go into a crisis. Now, I’m worried that if I’m not there demanding they give him his medicine, he could die. He has a medical alert bracelet, and he has well documented history with this hospital. Why didn’t they care for him?”

MY ENDOCRINOLGIST'S LETTER WAS NOT RECOGNIZED

“About one year ago I got the stomach bug. At 2:00AM I told my husband I couldn’t keep oral medicine down anymore. So he gave me my Solu-Cortef injection (as I get too shaky and disoriented and weak) and we headed to the ER. I don’t live that far from the local hospital and it’s quicker to drive than by ambulance. I’ve also read that in Maryland, paramedics can’t give specialty medicine even if I have all the stuff on hand.

So I get to the ER, show every single staff member my emergency letter written by my Johns Hopkins endocrinology team. It says it’s inappropriate to make me wait for my meds, to get me an IV whether there’s a room available or not, what dose to give, etc.

The nurse staff all kept brushing me off. They’ve told me in the past they can’t keep notes in medical files even though they are in the same complex/system/ownership as my family medicine doctor; so they already have my info. But they continued to ignore both my and my husband’s pleas for help and our requests to actually take my letter into consideration. As I grew weaker and couldn’t speak or stand, I waited for an hour – they had beds, but apparently were short staffed.

Finally, I get back to a room and they give me an IV but I don’t remember much. My husband and I had never been through a bad crisis like this before (I had my adrenal glands removed in 2018 so we’re still learning ourselves). My mom came to relieve my husband in the ER and noticed I wasn’t getting better or responding. I had stopped vomiting but was in and out of consciousness.

She called my endocrinologist and came to find out that despite my letter, she was never contacted to be made aware or give further instructions. So my mom took matters into her own hands and took me home without the ER doctor’s approval, and then started up-dosing my oral meds and gave me more Solu-Cortef injections at home. Upon looking at my hospital file later, my endo discovered they had completly disregarded my husband, me, and the emergency letter… and only gave me IV fluids and not more Solu-Cortef/hydrocortisone.

Now I have a new letter from her that starts with “if you aren’t qualified to handle her and these instructions, get her to a Johns Hopkins hospital ASAP.” But it makes me worry even more that I’ll be in a situation where medical staff can’t help me and I can’t administer my injection myself. Praying an easier solution like an EpiPen technology administration comes out soon!”

WE'VE HAD MANY ER EXPERIENCES

My daughter is going on 35-years-old, and we’ve had so many bad ER experiences that I couldn’t even provide a number for how many. The most recent time was a few months ago. She had been very sick for several days. We had plenty of Solu-Cortef but, due to a separate on-going issue, the pharmacy wouldn’t provide needles so that we could use it. She didn’t want to go to the ER, partly because of previous bad experiences, but I insisted. When we got there she had to go and sit down while I registered her at the admitting desk. The act of getting to the car and then walking across the parking to the ER had worn her out and she was unable to stand. I explained to the ER admitting person that she was having an adrenal crisis and needed immediate attention. She just kept asking “well what’s wrong?” I tried to briefly explain an adrenal crisis and stressed the urgency of care required. She came back with “but what’s wrong!!??” Again I explained that her system was basically shutting down and she needed immediate IV meds and fluids. Still she asked “but what’s wrong?” There’s only so many ways you can say she’s going to die if you don’t do something NOW. Then she yelled at me and said “But what’s wrong with her?? Does she have a stomach ache? A headache? Is something hurting? I need to know why she’s here!!!!” I don’t even remember what I told her, but thankfully a young man working at the station next to her picked up on things. He went and got a wheelchair and got her inside to a nurse. The nurse immediately saw a problem and got my daughter into a room because she was hypotensive. Much chaos followed and ultimately she was transferred to the ICU of a different hospital that provided a higher level of care. We are fortunate that she responded quickly to proper treatment and she was able to go home a few days later.

The initial admission process at the ER is almost always an issue. It seems nobody ever understands what an adrenal crisis is. For an emergency room, that should be something admissions people are aware of.

We have also had multiple issues with doctors in the ER. One doctor wanted me to go home and get her medication bottles because my daughter was too weak to even answer questions and I didn’t know her current dosing instructions. She was in her 20s at the time and had switched from hydrocortisone to dexamethasone so I didn’t know the exact dose. To drive home and then back would have taken about 40 minutes. In the end I insisted she call the endocrinologist on call at the Boston hospital where my daughter was treated for most of her life. That’s what finally got my daughter the care she needed.

At the same ER, just about a year ago, an ER doctor was basically yelling at her and demanding an explanation about what she had done to make her salt levels so low. I finally had to yell back at him and tell him that being a salt loser was part of congenital adrenal hyperplasia. He tried to act like he knew this all along, then he wrote something down and left. I assume he went to look up information because after he came back she was finally given proper care. She was hospitalized for 3 days while they corrected her salt imbalance.

OUR EMERGENCY STORIES

FINN’S EXPERIENCE – In the days leading up to a family wedding, our son Finn began showing signs of illness—vomiting, extreme lethargy, and declining rapidly despite oral stress doses. After he fell asleep during the rehearsal dinner, we brought him to the ER, knowing he needed IV fluids and Solu-Cortef before a full adrenal crisis occurred.

At the ER, the resident focused only on the vomiting and was dismissive of Finn’s lethargy, despite him receiving 80 mg of hydrocortisone that day (his normal dose is 7 mg per day). The resident brushed off our concern, saying, “It’s 10 p.m.—of course he’s tired.” He did not administer the appropriate amount of Solu-Cortef or fluids, (basically giving him a maintenance dose of fluids so he could say he gave fluids), refused to call endocrinology, and discharged Finn without ensuring he could keep food or fluids down.

Finn pushed through the wedding but was still unwell the following day. On Saturday, both Finn and our daughter Landrie had worsened. Although both clearly needed their emergency Solu-Cortef injections due to vomiting and dehydration, we hesitated and did not administer them. We feared, based on the prior experience, that the ER would not take us seriously if they didn’t “look sick enough” and might again send us home.

We returned to the ER and this time made sure to emphasize their adrenal insufficiency. Both children were now visibly very ill. IV access was quickly established, and they received the correct doses of Solu-Cortef and fluids.

While in the restroom, Finn quietly asked me, “Am I dying?” He then added, “Are you sure? Because it feels like today is my last day on earth.” As a parent, this moment was devastating. No child should have to wonder if help will come in time.

The attending physician, who had also been on duty Thursday night, apologized for the earlier mismanagement. We later learned both children were suffering from norovirus and strep.

This experience underscores the life-threatening consequences of delays or errors in recognizing and treating adrenal crisis. It also reveals the emotional toll this uncertainty takes on families.

CASE’S EXPERIENCE – Case woke up with labored breathing and was quickly taken to the ER, where he was diagnosed with croup. He was seen promptly and received a breathing treatment and a dose of prednisolone. However, as we were being discharged, I asked about how this would impact his routine CAH treatment.

The nurse wasn’t sure, so she checked with the ER physician, who told us to continue Case’s usual hydrocortisone regimen because “prednisolone treats the croup, and hydrocortisone treats the CAH.” We knew this was incorrect, as both are glucocorticoids.

Rather than argue, we contacted the on-call pediatric endocrinologist. She confirmed the misinformation, but after my questioning, explained that they often avoid holding hydrocortisone during steroid overlap because parents sometimes forget to restart it, putting the child at risk. She acknowledged that the correct medical protocol would be to pause hydrocortisone while prednisolone is active, then resume it at a double dose for two days before returning to the maintenance dose. We followed this correct protocol.

This case highlights how even well-meaning providers may lack the specialized knowledge to safely manage adrenal insufficiency—emphasizing the need for consistent training and updated ER protocols.

LANDRIE’S EXPERIENCE – Landrie fell down the stairs at home and appeared to have broken her elbow. Given her diagnosis of classic congenital adrenal hyperplasia (CAH), we knew she was at risk of adrenal crisis. She was able to tolerate oral medication, so we administered an oral stress dose of hydrocortisone and took her to the local ER at ProMedica Russell J. Ebeid Children’s Hospital.

At triage, I explained that we suspected a fracture and that Landrie has CAH. I presented her emergency letter from Dr. Kyriakie Sarafoglou. The triage nurse reviewed the letter, contacted the back, and we were taken in immediately. She admitted she had never seen such a letter before and asked questions about adrenal insufficiency. She also acknowledged that without the letter, we likely would have waited much, much longer.

Once in a room, the nurse read the letter thoroughly and commented on how helpful and detailed it was—something he had not seen before in his experience. Thanks to that document, Landrie was properly treated with CAH protocols in mind. This visit clearly demonstrated how vital a well-written emergency protocol letter can be in determining whether a child with adrenal insufficiency receives timely and appropriate care.

A TYPICAL EMERGENCY EXPERIENCE FOR ME

My experience in the hospital is always a rough time because doctors are more than often not aware of CAH salt-wasting. My mom has had to advocate for me every single time we go. They argue about giving a stress dose. I typically have to reach out to the endocrinologist. Reaching out can also be challenging because they do not always have on call.

When I was a teenager, I got sick with the typical flu right before I was scheduled to get the flu shot. I could not keep my medicine down after three times so my mom took me to the hospital. We did not have Solu-Cortef at that moment. It took the hospital so long to give me the stress dose that I needed. They finally did and I did not go into an adrenal crisis. My mom had even taken the emergency kit with us with information.

It is not a fun experience going to the hospital. Even when I was in active labor it took them what felt like forever to get the stress dose administered.

OUR FIRST EMERGENCY EXPERIENCE

December 25th, 2019 should have been a magical holiday—full of Santa’s gifts, joyful laughter, and precious time with family. Instead, it became one of the darkest, most heartbreaking days of our lives. That Christmas, we were thrust into a terrifying reality as we learned what Salt Wasting Congenital Adrenal Hyperplasia was. We watched helplessly as our seven-day-old baby fought through a life-threatening adrenal crisis, something no parent should ever have to witness.

My son, Maddox, began the day by acting ‘off’ and not wanting to eat. With two babies at home and while recovering from a c-section, my husband decided he would take him to our local emergency department – which would be our first mistake. Inadequate care and lack of knowledge, almost cost our child his life. The physician at the hospital sent our son home stating that they believed he had Acid Reflux even though he was not eating, slightly lethargic, and had developed a tremor in his hand. They stated, “Go see the pediatrician in the morning.” Little did we know that by the next morning our lives would be forever changed.

That night I tried to feed Maddox again and he still wouldn’t eat. It wasn’t long after that, that he began vomiting what appeared to be bile and having a seizure. I immediately called 911 and an ambulance was dispatched to our home. Thankfully, the ambulance was stationed just a few miles away and they made it very quickly. Their assessment was that we needed to get to the children’s hospital in Atlanta – an hour away by car. My husband left in the ambulance as I left our other two children with my mother – on Christmas – and left on my way.

As I ran into the hospital to find my son, my heart sank as I was led to a trauma room filled with a team rapidly working on. His small body was surrounded by beeping machines, nurses, and doctors all saying things that I didn’t understand. We were told that his heart was trying to stop and his bloodwork was all over the place – they didn’t know what was happening to him. Then the Chaplain walked in with the doctor and my heart shattered because I knew we were facing something that wasn’t good. The doctor told us he didn’t think that our son was going to survive.

Sitting there in the unknown felt like an out of body experience. We watched, we waited, we cried.. A nurse asked if I would like to hold the nebulizer treatment they were doing to push the potassium down – I said yes. As I stood up, I collapsed and right on time another nurse caught me. She was an angel that night and today I couldn’t tell you her name, what she looked like, or how she knew to hold me as I sobbed on the floor. My husband stepped in and the treatment seemed to help.

After what felt like a lifetime, the doctor told us that he believed that Congenital Adrenal Hyperplasia was what had caused Maddox to become so sick and that it was something we could treat. A wave of emotion rolled off of me as that was the first positive thing that we had heard since our arrival. Our son was stable and we were being moved to the NICU. What we didn’t know was that the roller coaster was just starting and we were in for a ride that we weren’t prepared for.

I had never been in a NICU and entering with your baby is a feeling that I cannot describe. We were surrounded by other babies, families, and so many doctors and nurses. The NICU doctor sat down with us and began explaining what she could to us; they needed to run tests, they wanted to know why we hadn’t received his newborn screen results yet, and they wanted to insert a PICC line which meant for the first time since we walked into the hospital we had to leave our son. As one can imagine after everything that had transpired, the lack of sleep, and the heightened emotions that didn’t go over well. I didn’t want to be away from him, but in the end I knew that I had to go so that they could help him.

After walking out, our family was waiting for us in the lobby unexpectedly. I wanted to fall apart, but I couldn’t. We had to send them a list of things we needed and then we had to go across the street to begin our stay at The Ronald McDonald House – our home for the next two months. Once we made it to our room it felt like the world collapsed all over again and the question of “What is CAH?” weighed heavy in our minds. That’s when the research began.

I found a Facebook community and within an hour I had people from all over the world commenting, messaging, and even offering to call us to explain what was going on with us and how life looked with CAH. It gave me an overwhelming feeling of hopefulness in my intense moments of fear and sadness. They are still there to this day, ready and willing to answer any questions, but now I can also chime in with new families as well offering the same support that we were once offered.

Once we were called to come back to the NICU we began learning more about what was going on. Maddox had an adrenal crisis brought on by Salt Wasting Congenital Adrenal Hyperplasia. He was having arrhythmias due to his potassium being over 10, his sodium had dropped dangerously low and so had his blood sugar which explained the lethargy, refusal to eat, and seizures. We started learning and taking in everything – becoming what felt like, and still does, junior Endocrinologists.

That was almost six years ago and those memories are still fresh in my mind as they were the day that they happened. We’ve gone through several adrenal crises since then and each one is difficult, but we’re so much better prepared now. We know what to do, what is going on, and how to act quickly.

I have had to be Maddox’s voice and I advocate for him as fiercely as I can. I have had to go head to head with our ambulance department and I was able to get policy changed, I’ve had to explain his condition and how to treat it with nurses and doctors, and I will continue to share his story with anyone who will listen because our community is burdened with lack of knowledge by medical professionals and first responders, lack of urgency in getting newborn screening results back, and proper resources for patients and families alike that go through this journey. This is why we have to continue sharing our stories and letting our voices be heard in hopes that change will come – maybe not right this moment, but eventually it will.

Jes Barron's 50 Mile Ultramarathon

Learn more about Jes’ participation in the 63rd Annual JFK 50 Mile, taking place on November 22, 2025 in Boonsboro, MD as he trains to raise awareness and help inspire those with CAH and other chronic conditions.

Best of luck Jes; we are rooting for you! 

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Catch up on all of our podcast episodes so far!

CAH Pulse takes us on a journey to educate and bring attention to the challenges and triumphs of individuals living with Congenital Adrenal Hyperplasia (CAH). Throughout CAH Awareness Month, listen to patients, family members, medical professionals, researchers and caregivers share their stories, experiences and advice living with this challenging condition. Our hope is to further connect and champion this incredible community.

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Answer CAH-related questions and brush-up on your/your loved one’s condition. The top scores will be awarded prizes from the CARES Foundation Shop at the end of the month. Please click the button below to answer this week’s question(s). 

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BE PREPARED IN AN EMERGENCY

SIGNS OF ADRENAL CRISIS | Learn about what an adrenal crisis looks like

Acute adrenal crisis is a life-threatening condition that occurs when there is not enough cortisol. This is a hormone produced by the adrenal glands.

Causes

The adrenal glands are located just above the kidneys. The adrenal gland consists of two parts. The outer portion, called the cortex, produces cortisol. This is an important hormone for controlling blood pressure. The inner portion, called the medulla, produces the hormone adrenaline (also called epinephrine). Both cortisol and adrenaline are released in response to stress.

Cortisol production is regulated by the pituitary. This is a small gland just underneath under the brain. The pituitary releases adrenocorticotropic hormone (ACTH). This is a hormone that causes the adrenal glands to release cortisol.

Adrenaline production is regulated by nerves coming from the brain and spinal cord and by circulating hormones.

People who do not have adrenal insufficiencies naturally produce up to ten times the normal amount of cortisol, which is vital to the maintenance of blood pressure and heart muscle tone, as well as sugar and salt balance, during times of physical stress. When illness or injury occurs in adrenally insufficient individuals, however, an immediate additional dose of glucocorticoids (hydrocortisone) is necessary to avert adrenal crisis. Delay in administration of these medications can lead to shock, heart failure and death.

Signs of adrenal crisis, which are not readily identifiable, include:

  • Pallor
  • Dizziness
  • Headache Weakness/lethargy
  • Abdominal pain
  • Vomiting/nausea
  • Hypoglycemia
  • Hypotension
  • Shock Heart failure

To learn more, and find a variety of resources to help you stay better prepared in the event of adrenal crisis, please visit https://caresfoundation.org/be-prepared-in-an-emergency/.

VISIT YOUR LOCAL FIREHOUSE/EMS SERVICE

TO BE PREPARED FOR AN EMERGENCY, YOU MUST MAKE SURE YOUR LOCAL FIREHOUSE AND/OR EMS STATION IS AWARE OF YOUR OR YOUR CHILD’S ADRENAL INSUFFICIENCY/CAH STATUS! WE URGE YOU TO VISIT YOUR FIREHOUSE/EMS STATION RIGHT AWAY! Develop an individualized plan in the event of an adrenal crisis.

Ask your EMS provider to flag your address in the 911 system so that emergency personnel are aware of your adrenal insufficiency statues.

Ask your EMS provider if your state has an identification system for those with special medical needs. These programs alert EMS providers of emergency treatment needed for those with a medical condition. These programs can include:

Premise Alert Notification SMART 911 (Ask your EMS provider if your state has an identification system for those with special medical needs. These programs alert EMS providers of emergency treatment needed for those with a medical condition. These programs can include:

  • SNAP (Special Needs Alert Program) 
  • STARS (Special Needs Tracking and Awareness Response System) see American Academy of Pediatrics article abstract about STARS 
  • Yellow Dot

For a successful EMS provider visit, print a copy and bring with you:

  • EMS Provider Visit Tip Sheet
  • Emergency Instructions Brochure
  • Medication Safety Alert (EMS Protocols for Adrenal Crisis)
  • Medication Safety Alert Letter

EMS ORGANIZATIONS AND PROVIDERS: BE SURE to access the documents linked above for VITAL INFORMATION to help you better serve your communities.

WEAR/CARRY MEDICAL I.D. | Why it's important & what is should say

All leading practitioners recommend that you always wear a medical ID.

In an accident or medical emergency like adrenal crisis, your medical ID will immediately alert emergency personnel to your condition. First responders are trained to look for a medical ID and they will ensure you get the correct treatment as quickly as possible.

If you are living with adrenal insufficiency, a medical ID could save your life.

What type of I.D.?

  • All people who are Adrenal Insufficient/Steroid Dependent should wear Medical Identification that says: Adrenal Insufficient/Steroid Dependent, Administer Solu-Cortef® (with appropriate dosage), AND date of birth. You can also consider listing the specific diagnosis “congenital adrenal hyperplasia” or health status “cortisone dependent” or even “treat with hydrocortisone.”
  • If you have any questions as to what information you should put on your or your child’s medical alert identification, CARES Foundation encourages you to discuss this with your endocrinologist. At a minimum, however, “adrenal insufficiency” should be on the identification and it should come first.
  • CARES Foundation offers a practical medical I.D. for kids and those who lead a more active lifestyle. See our Medical I.D./Shoe Tags/Luggage Tags in the CARES Shop on our website.
  • MedicAlert Foundation is a highly recognized service and I.D. shop. Memberships come with a 24/7 Emergency Response Team with access to members’ health records and the team is trained to provide critical information to first responders.

Print & download wallet-sized medical I.D. cards with you on a daily basis

We recommend that you always have a Medical I.D. with you at all times in the event of adrenal crisis. Please visit https://caresfoundation.org/be-prepared-in-an-emergency/ to download our printable medical I.D. cards to place in your wallets for every day use.

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