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What is BBS?

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Bardet-Biedl (pronounced BAR-day BEED-el) syndrome, also known as BBS, is a rare genetic disease that can cause obesity

BBS has a wide range of symptoms that can impact many systems in the body

Signs and symptoms of BBS

  • Learning disabilities
  • Visual impairment
  • Hyperphagia
  • Obesity (any age) or overweight (<2 years old)
  • Kidney problems
  • Genital and hormonal problems
  • Extra toes or fingers (polydactyly: paa•lee•dak•tuh•lee)

Other symptoms of BBS may include:

  • Brain: Speech delay, developmental delay, poor coordination, partial or total loss of smell
  • Skeletal: Dental problems, shorter or webbed toes or fingers
  • Craniofacial (related to the bones and soft tissue of both the skull and the face): Noticeable characteristic facial features
  • Body organs: Differences in organ positioning
  • Hearing: Hearing loss

Heart defects may be observed in people with BBS.

Unlike other forms of obesity, obesity due to BBS is caused by variants, or changes, in a BBS gene. BBS genes are inherited, meaning they are passed down from parent to child, and affect how the brain controls hunger.

The symptoms of BBS may affect multiple parts of the body, vary in severity, and change with age. While the symptoms shown here are some of the most common, not all people with BBS will experience every symptom listed.

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IMCIVREE is the first and only treatment that targets a root cause of obesity and hunger in people living with BBS.

What is hyperphagia?

Hyperphagia (pronounced hi-per-FAY-juh) is constant, hard-to-control hunger that does not go away

Not all hunger is the same. Constant, hard-to-control hunger due to BBS is different from typical hunger and known as hyperphagia. The majority of people living with BBS experience hyperphagia – and may suspect that it’s different from the type of hunger most others feel.

Typical Hunger

  1. Feeling hungry in between meals
  2. Having cravings from time to time
  3. Eating past fullness at big occasions like Thanksgiving
  4. Eating to feel happy, when you’re bored, or during times of stress (emotional eating)

Constant, Hard-to-Control Hunger (Hyperphagia) Due to BBS

  1. Feeling hungry all the time
  2. Having continual thoughts about food
  3. Eating throughout any given day because you never feel full
  4. Eating to feel less hungry but never achieving a feeling of fullness

What does hyperphagia look like?

Caregivers often observe these behaviors even if a child can’t share their feelings:

  • Demanding or negotiating for food
  • Tantrums when food is unavailable
  • Waking up at night to find food or staying awake because of hunger
  • Night eating, sneaking food, or hiding food

Adults may experience these common behaviors of hyperphagia:

  • Planning the day around food
  • Feeling sadness, frustration, guilt, or anxiety when food isn’t available
  • Waking up in the middle of the night to eat or staying awake because of hunger
  • Hiding or sneaking food

It’s important to understand the differences between hyperphagia due to BBS and typical hunger. Recognizing the type of hunger you are experiencing is the first step in getting the right kind of help.

Talk to your doctor if you’re concerned that your hunger might be hyperphagia.

After her first birthday, we noticed a rapid weight gain, and she threw tantrums all the time. Looking back, I see this was most likely due to how hungry she felt.

– Caregiver of a patient taking IMCIVREE

One of the most challenging symptoms (of BBS) was hyperphagia. Even a birthday party was stressful. While all the kids were socializing, he was only concerned about food.

– Caregiver of a patient taking IMCIVREE

Before IMCIVREE, I didn’t realize how much time I spent focusing on food, and how much that was affecting my day-to-day and the other things I could be accomplishing.

– Person living with obesity due to BBS

I absolutely see varying degrees of hyperphagia, from extreme cases where patients have locks on cabinets and do not keep food in the home, to other less extreme cases where they’ve learned to adapt around it.

– Obesity and Weight Management Specialist

Individual results may vary.

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Resources to support you along the way

Rhythm InTune Patient Education Managers (PEMs)* offer educational tools to help you learn more about BBS, and provide personalized ongoing support to help you stay informed throughout your treatment journey.

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*Patient Education Managers are employees of Rhythm Pharmaceuticals and do not provide medical care or advice. We encourage you to always speak to your healthcare providers regarding your medical care.

Explore our resource library for additional support and information.

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What is IMCIVREE?

IMCIVREE is a prescription medicine used in adults and children 2 years of age and older with obesity due to Bardet-Biedl syndrome (BBS) to help them lose weight and keep the weight off.

IMCIVREE is not for use in people with the following conditions because it may not work:

  • Other types of obesity not related to BBS or other FDA-approved uses of IMCIVREE, including obesity associated with other genetic conditions and general obesity

It is not known if IMCIVREE is safe and effective in children under 2 years of age.

Important Safety Information

Do not use IMCIVREE if you have had a serious allergic reaction to it or any of its ingredients. Serious allergic reactions, including anaphylaxis, can happen.

Before you use IMCIVREE, tell your healthcare provider about all your medical conditions, including if you:

  • Have or have had areas of darkened skin, including skin discoloration (hyperpigmentation)
  • Have or have had depression, or suicidal thoughts or behavior
  • Have kidney problems
  • Are pregnant or planning to become pregnant. Losing weight while pregnant may harm your unborn baby. Your healthcare provider may stop your treatment with IMCIVREE if you become pregnant. Tell your healthcare provider if you become pregnant or think you might be pregnant during treatment with IMCIVREE
  • Are breastfeeding or plan to breastfeed. It is not known if IMCIVREE passes into your breast milk. You should not breastfeed during treatment with IMCIVREE

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

See the detailed Instructions for Use that come with your IMCIVREE to learn how to prepare and inject IMCIVREE, and how to properly throw away (dispose of) used syringes and needles.

What are the possible side effects of IMCIVREE?
IMCIVREE may cause serious side effects, including:

  • Male and female sexual function problems. IMCIVREE can cause an erection that happens without any sexual activity in males (spontaneous penile erection) and unwanted sexual reactions (changes in sexual arousal that happen without any sexual activity) in females. If you have an erection lasting longer than 4 hours, get emergency medical help right away
  • Depression and suicidal thoughts or actions. You or a caregiver should call your healthcare provider right away if you have any new or worsening symptoms of depression, suicidal thoughts or behaviors, or any unusual changes in mood or behavior
  • Serious allergic reactions. Stop taking IMCIVREE and get medical help right away if you have any symptoms of a serious allergic reaction including: swelling of your face, lips, tongue, or throat; problems breathing or swallowing; severe rash or itching; fainting or feeling dizzy; rapid heartbeat
  • Increased skin pigmentation, darkening of skin lesions (moles or nevi) you already have, and development of new skin lesions. These changes happen because of how IMCIVREE works in the body and will go away when you stop using IMCIVREE. You should have a full body skin exam before starting and during treatment with IMCIVREE to check for skin changes

The most common side effects of IMCIVREE include darkening of the skin, injection site reactions, nausea, headache, diarrhea, stomach pain, vomiting, depression, and an erection that happens without any sexual activity in males.

These are not all the possible side effects of IMCIVREE. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see full Prescribing Information, including Patient Information.

Use and Important Safety Information

What is IMCIVREE?

IMCIVREE is a prescription medicine used in adults and children 2 years of age and older with obesity due to Bardet-Biedl syndrome (BBS) to help them lose weight and keep the weight off.

IMCIVREE is not for use in people with the following conditions because it may not work:

  • Other types of obesity not related to BBS or other FDA-approved uses of IMCIVREE, including obesity associated with other genetic conditions and general obesity

It is not known if IMCIVREE is safe and effective in children under 2 years of age.

Important Safety Information

Do not use IMCIVREE if you have had a serious allergic reaction to it or any of its ingredients. Serious allergic reactions, including anaphylaxis, can happen.

Before you use IMCIVREE, tell your healthcare provider about all your medical conditions, including if you:

  • Have or have had areas of darkened skin, including skin discoloration (hyperpigmentation)
  • Have or have had depression, or suicidal thoughts or behavior
  • Have kidney problems
  • Are pregnant or planning to become pregnant. Losing weight while pregnant may harm your unborn baby. Your healthcare provider may stop your treatment with IMCIVREE if you become pregnant. Tell your healthcare provider if you become pregnant or think you might be pregnant during treatment with IMCIVREE
  • Are breastfeeding or plan to breastfeed. It is not known if IMCIVREE passes into your breast milk. You should not breastfeed during treatment with IMCIVREE

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

See the detailed Instructions for Use that come with your IMCIVREE to learn how to prepare and inject IMCIVREE, and how to properly throw away (dispose of) used syringes and needles.

What are the possible side effects of IMCIVREE?
IMCIVREE may cause serious side effects, including:

  • Male and female sexual function problems. IMCIVREE can cause an erection that happens without any sexual activity in males (spontaneous penile erection) and unwanted sexual reactions (changes in sexual arousal that happen without any sexual activity) in females. If you have an erection lasting longer than 4 hours, get emergency medical help right away
  • Depression and suicidal thoughts or actions. You or a caregiver should call your healthcare provider right away if you have any new or worsening symptoms of depression, suicidal thoughts or behaviors, or any unusual changes in mood or behavior
  • Serious allergic reactions. Stop taking IMCIVREE and get medical help right away if you have any symptoms of a serious allergic reaction including: swelling of your face, lips, tongue, or throat; problems breathing or swallowing; severe rash or itching; fainting or feeling dizzy; rapid heartbeat
  • Increased skin pigmentation, darkening of skin lesions (moles or nevi) you already have, and development of new skin lesions. These changes happen because of how IMCIVREE works in the body and will go away when you stop using IMCIVREE. You should have a full body skin exam before starting and during treatment with IMCIVREE to check for skin changes

The most common side effects of IMCIVREE include darkening of the skin, injection site reactions, nausea, headache, diarrhea, stomach pain, vomiting, depression, and an erection that happens without any sexual activity in males.

These are not all the possible side effects of IMCIVREE. Call your doctor for medical advice about side effects. You are encouraged to report negative side effects of prescription drugs to FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

Please see full Prescribing Information, including Patient Information.

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