For this article, the goal is to outline several ways people can get involved and help save babies with EB. It's important to maintain this perspective when writing the article.

 X ways top ways to get involved and save EB babies

Ways you can help

DOnate today - make a secure one-time donation

Join our special monthly giving group, to help sustain important programs and invest in the long-term support and care of those with EB.

Workplace Giving
A matched gift from your employer allows you to double, or even triple, the impact of your support.

Leave a Legacy
You can choose to support by making a planned gift to ensure that people with EB have the future support and resources they need.

Memorial or Tribute
A memorial or tribute donation is a thoughtful way to honor a loved one or to celebrate a special occasion.

Volunteer to help find a cure.
Become a Volunteer
Volunteering means joining a dedicated team committed to advancing research, raising awareness, and improving the lives of those affected by Epidermolysis Bullosa (EB). Whether you can offer a few hours or a regular commitment, your support is crucial in our fight to find a cure for EB.



How to Get Involved

Join Us in the Fight Against EB
Every volunteer plays a vital role in furthering our mission. Whether you’re passionate about making a difference, developing new skills, or connecting with others, volunteering offers a rewarding experience.

Ready to make a difference?
Simply apply via our current listings using the link below.
Together, we can make a significant impact in the lives of those affected by Epidermolysis Bullosa. Thank you for considering joining the Cure EB Foundation team.






Volunteer Opportunities
We offer a variety of roles to match your skills and interests:

Event Support: Help us organise and manage events, from fundraising galas to community awareness campaigns. Your assistance in setting up, managing registrations, and ensuring smooth operations will help us reach our goals.

Special Projects: Contribute your expertise to specific projects, such as marketing and communications, research support, or program development. Your skills can drive innovation and progress in our work.






Office Support: Provide administrative support at our Melbourne headquarters. Tasks may include data entry, communication management, or assisting with project coordination.

Community Engagement: Be an advocate for EB awareness by participating in school visits, community talks, and outreach activities. Help spread the word and educate others about the impact of EB.
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No Baby Blisters

Direction: X ways top ways to get involved and save EB babies

Rough, incomplete thoughts on how to approach the brief summary and lead paragraph for the news article:

A Colorado Springs-based charity is campaign to draw attention to epidermolysis bullosa, sharing ways people can get involved.

No Baby Blisters, through its Hero Guardian Angel program now offers people can make direct impact and contribution towards providing much-needed medical supplies and help drive (fund) research on long-term treatments.

For more details, please visit

Content from client's website:

SADLY, we are the only charity helping our babies so your donations are literally life-saving. Your donations are 100% Guaranteed to help stop the severe pain and death of our babies.

500,000 children suffering from EB around the world deserve a life free of pain and full of hope.

donate Monthly, it will help babies never run out of severe pain medicine, life-saving bandages, antibiotics, wound-healing nutrition, and medical care. Monthly donations will also provide critical funding to accelerate our expert, innovative medical research for a full-body cure for EB disease and other devastating diseases.

What is EB?
EB (epidermolysis bullosa) is a genetic blistering skin disease that causes a baby’s skin to blister and peel off creating extreme pain and death in its most severe forms. EB is caused by a gene mutation that creates a very weak bond between the baby’s skin layers in the epidermis and dermis. Friction, pressure, and heat on the skin causes blisters and skin loss.

Why hasn't this disease been cured?
Orphan diseases are conditions affecting fewer than 200,000 people nationwide, like EB, Cystic Fibrosis, Lou Gehrig's Disease, or Tourette Syndrome.* Cures for orphan diseases, like EB, have historically gone unfunded by big pharma and government.

Numerous type of creams to treat wounds are approved or being developed, but no true cure for the entire body.

No Baby Blisters Offers great hope in its multimodal Fast Cure Plan
Our research team includes top doctors with patents in genetic skin therapy, pioneering researchers, scientific innovators, and FDA experts to create an affordable EB cure to end the pain and death.

Our Founder Dr. Aaron Tabor, MD and His Heartbreaking Discovery

TO SAVE THE FORGOTTEN, MEDICALLY NEGLECTED CHILDREN, I FOUNDED NO BABY BLISTERS CHARITY.

GREAT NEWS!  You can save our innocent, forgotten and medically neglected children from miserable, painful daily lives by donating as little as $3 a month. Any amount makes a huge impact.

We are committed to do everything possible to NEVER let them run out of severe pain medicine, life-saving surgeries, medical supplies and wound-healing food that reduce their pain, suffering, and death.

Aaron Tabor, MD, Founder of No Baby Blisters, is an NIH-funded skin researcher. He is also the Founder and CEO of GENIE Therapeutics, a biotechnology company developing cures for skin scarring, pigmentation and wrinkles.

WHAT I DISCOVERED MADE ME SO UPSET…

While developing my gene therapy drugs, I made a very upsetting and sad discovery. Right now, a massive crisis exists globally with thousands of rare disease children suffering in critical condition with zero help – sadly forgotten and medically neglected by other charities. They live in poverty in countries with zero chance of free healthcare.

I discovered that unfortunately no one is helping these forgotten and medically neglected children living in poverty, making their pain and suffering worse. They have no hope. I do not understand why the major charities have neglected these precious children, or why no one seems to care. Sadly, the parents are heartbroken and panicking in despair with nowhere to turn. In agony, many turn to begging. They need urgent emergency help and research for cures.

Our Fast Cure Plan
Systemic research to treat the entire body, not just the skin. A full-body systemic cure is needed.
Gene therapy that will override mutated skin gene proteins with healthy gene proteins to stop the blistering and skin cancer. Healthy genes produce healthy skin proteins needed to keep the skin from blistering off.
Molecular research using affordable natural ingredients that can reduce inflammation, itching, and speed skin healing.

No Baby Blisters are doing pain-stopping, life-saving work as documented in the National Institutes of Health (NIH) peer-reviewed medical literature database at the links below.

Organization boilerplate:

Our mission is to save rare disease EB (Epidermolysis bullosa) and other medically neglected babies from blisters, skin loss, extreme pain, and death.
Your donations to No Baby Blisters are doing pain-stopping, life-saving work as documented in the National Institutes of Health (NIH).
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Supporting families with a baby with Epidermolysis Bullosa (EB) requires extreme gentleness, specialized skin care to prevent blisters, and emotional support to manage high stress and isolation. Key actions include using non-stick dressings, avoiding friction, managing environmental temperatures, and connecting with organizations like Debra.org.
chopib.staywellsolutionsonline.com
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Essential Care and Handling
Gentle Handling: Never lift a baby with EB from under the arms. Support their entire body by lifting under the bottom and head, using a soft, non-stick surface like sheepskin or flannel.
Wound Care: Use non-adhesive, silicone-based dressings to prevent skin shearing.
Minimize Friction: Avoid tight clothing, use clothing without tags, and consider cutting elastic from diapers.
Temperature Control: Keep the environment cool, as overheating increases skin fragility.
Safe Handling Procedures: Use lubricants like Vaseline or Aquaphor to reduce friction.
Medical Precautions: Avoid adhesive tapes, sticky name bands, and rectal temperatures.
chopib.staywellsolutionsonline.com
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Emotional and Practical Support
Respite Care: Offer help with daily tasks, such as cooking, cleaning, or caring for other children, as care for an EB baby is time-intensive.
Connect with Resources: Refer families to debra of America, which offers support groups, educational materials, and care packages for new families.
Education: Educate family and friends on how to interact safely with the baby to avoid causing painful blisters.
Mental Health Support: Acknowledge the high stress, guilt, and emotional burden, offering a listening ear or connecting them with counselors experienced in chronic illnesses.
Cambridge Media Journals
Cambridge Media Journals
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Environmental Adjustments
Safe Space: Designate a specific, padded area for diaper changes and dressing changes.
Infection Prevention: Ensure a clean, dust-free home environment to prevent infections in open wounds

“Just when you think things are all right, another blister develops. At the most unexpected times, really. Well, that’s EB.”1

This is the heartbreaking sentiment many parents share when caring for their child diagnosed with Epidermolysis Bullosa (EB). Known as the “worse disease you’ve never heard of,” EB is a rare genetic skin disorder characterized by blistering of the skin due to the slightest friction.

Butterfly Children and Their Challenges
Children with EB are often called butterfly children: their skin seems to be as fragile as a butterfly’s wing. Blistering can also occur in the mouth, eyes, and gastrointestinal tract. EB occurs in 1 in 50,000 live births and affects all sexes, races, and ethnicities equally.


Symptoms are often invisible—hidden under bandages, long-sleeves, and pants—which contributes to the public’s lack of understanding about the real psychological, physical, and emotional impact of EB.


The four types of EB all range in severity and impact patients in a multitude of ways. Severely affected children wear extensive bandaging. Most patients with EB can live normal life spans, but more serious forms can be fatal at an early age. Children with EB often experience bullying, find it challenging to engage in social environments, and overall, feel different from their peers. It is not uncommon to be the recipient of stares while others may experience the opposite effect; symptoms are often invisible—hidden under bandages, long-sleeves, and pants—which contributes to the public’s lack of understanding about the real psychological, physical, and emotional impact of EB on a child.

While there is no cure for EB, ongoing clinical trials have developed treatments to manage symptoms. Research on the role of EB on families, however, is severely lacking. Very little is known about how diverse family structures, race/ethnicity, geography, socioeconomic status, and gender affect EB patients and their families.


Caring for a child with EB can easily become a full-time job.


Families and Epidermolysis Bullosa
Nevertheless, research does show that families do face significant challenges. While most EB patients are cared for by their primary care physician or pediatric dermatologist, severe forms of EB require a wide range of specialized healthcare professionals. These families find it challenging to coordinate multiple appointments and have even expressed the need for their own administrative employee. Caring for a child with EB can easily become a full-time job, posing unique challenges for families with low socioeconomic status and nontraditional family structures such as single-parent households.

There are only four comprehensive, interdisciplinary EB treatment centers in the United States. This presents significant barriers to access for patients suffering from severe forms of EB. Furthermore, families have reported significant financial and emotional strain. Specialized bandages are expensive, and wound care may take up to four hours per day. Bandage changes are painful for the affected child, and caregivers often feel extreme guilt during this process. One parent comments, “There is always yelling and crying and screaming: ‘I don’t want this and it hurts so much.’ Yes, that just stabs you in the heart.”1

How Can Clinicians Help?
Many families have expressed their frustration for the lack of EB knowledge among healthcare providers, even in hospital systems. Nutritionists, social workers, psychologists, physicians, and physical therapists must work cohesively to coordinate EB patient care, so continuous clinician education about breakthrough treatments and care plans is essential.

Due to the taxing nature of EB care plans, clinicians can help patients and their families build support networks by connecting them to local support groups, clergy, social workers, and even other families caring for a child with EB.

Every year, 200 children are born with EB in the United States, but every day individuals with EB and their families struggle with the physical, financial, and emotional burdens of the disease.

While strides are being made in EB research, individuals and families still need our help today.

When a baby is born with Epidermolysis Bullosa (EB), the lightest touch can be the cause of great pain, and everyday moments can become great medical challenges. This rare and devastating genetic skin condition causes the skin to blister and tear at the slightest friction, it can cause wounds that never heal, and skin infections that can lead to sepsis and even death. Caring for a child with EB is not just complex, it is also constant.

Affecting the body’s largest organ, the skin, children with EB are often referred to as ‘butterfly children’ because their skin is as delicate as butterfly wings. The simple act of a hug can tear their fragile skin – making the thought that a parent’s first embrace of their newborn could cause harm a heartbreaking and unimaginable reality. In its most serious forms, the condition extends beyond the skin, affecting the internal linings of the mouth, throat, eyes, and digestive tract.

Children with EB require highly coordinated, multidisciplinary care involving dermatology, paediatrics, palliative care, ophthalmology, gastroenterology, dentistry, pain services, psychology, and allied health.

Who gets epidermolysis bullosa?
EB is rare. It is estimated that between 25,000 and 50,000 people in the United States have EB1.

When a person has EB, the different layers of skin slip and slide against each other because the skin lacks the proteins needed to hold each layer in place.

Layers of skin illustration
Most types of EB begin in childhood. The fragile skin and blistering of EB are usually noticeable at birth or shortly thereafter. If a child has a mild case of EB, the blisters may begin when the child starts to crawl. Only one type of EB, epidermolysis bullosa acquisita (EBA), begins in adults.

A child has a higher risk of developing EB if one or both parents carry genes for EB.

As for race, EB develops in children of all races and ethnic groups.

What causes epidermolysis bullosa?
No type of EB is contagious. All but one type, epidermolysis bullosa acquisita (EBA), are caused by gene mutations. A mutation creates a slightly different version of a gene.

When a child has EB, these slightly different genes mean the skin is missing the proteins needed to hold it together. Without these proteins, a gentle touch can cause the layers of skin to slide against each other, creating friction. It’s this friction that causes blisters to form.

While a gentle touch can cause blisters to form, that’s not the case for everyone who has EB. The type of EB a person has determines how easily the skin blisters.

When a child develops blisters in other areas, such as the mouth, throat, or rectum, it means that these areas are also missing the proteins that hold these layers together.

The cause of EBA is a bit different. It’s thought that this type of EB is an autoimmune disease. When someone develops an autoimmune disease, the person’s immune system mistakes a part of the body as foreign and attacks it.

When a person develops EBA, the body is attacking and destroying the proteins that hold the layers of skin together.

Genetic counseling can identify EB genes
Because EB can be such a painful and often disabling disease, people living with EB or who have EB in their family often want to spare their children from getting it. Genetic testing can tell you how likely it is that you will have a baby with EB. Testing can take several months, so it is best to do it before trying to have a child.

It’s also possible to tell if a baby growing inside its mother has EB; however, this test can be risky for the baby.