Letter Templates
Disability Letter Template
To be printed on your physician’s letterhead
To Whom It May Concern:
I have been treating _________ since_____ for ________________. It is a rare genetic condition that affects the skin but can also cause issues with mobility, dehydration, sun exposure, respiratory problems, overheating, itch, metabolic deficiencies and more.
This patient needs to use products that moisturize the skin, assist in exfoliation, and protect from the sun. These products are typically applied several times a day.
This is a permanent disability that limits several aspects of daily life, including bathing, work, play, childcare, outdoor exposure, diet, and more. The nature of these limitations varies according to time of year and disease flare-ups. These limitations can be accommodated by access to shade/air conditioning/ cooling devices, frequent moisturization, bathing routines, and exfoliation.
Sincerely,
signature
date
I have been treating _________ since_____ for ________________. It is a rare genetic condition that affects the skin but can also cause issues with mobility, dehydration, sun exposure, respiratory problems, overheating, itch, metabolic deficiencies and more.
This patient needs to use products that moisturize the skin, assist in exfoliation, and protect from the sun. These products are typically applied several times a day.
This is a permanent disability that limits several aspects of daily life, including bathing, work, play, childcare, outdoor exposure, diet, and more. The nature of these limitations varies according to time of year and disease flare-ups. These limitations can be accommodated by access to shade/air conditioning/ cooling devices, frequent moisturization, bathing routines, and exfoliation.
Sincerely,
signature
date
New Student’s Letter Template
Hi Classmates and Parents!
My name is _________ and I’m in _____ grade this year! This is my ______ year at _______ School and I can’t wait to meet you! But I also want to give you a heads up about something special and different about me. I was born with a skin condition called ________ ichthyosis that makes my skin look different from everyone else. My skin looks scaly, like dark brown spots all over and it gets very dry and flaky. I don’t sweat so the heat really affects me. My skin only hurts when it’s dry. I have to do some things a little differently, but I am the same as you on the inside. I love [list activity, pets, other things that make you happy]. My [tell them a little bit about your family members and attach a picture ex: I’m the kid on the right in the picture ________ is the goofball on the left.]
I’m sorry if I ever have to sit out on physical activities or leave class to cool off. I can get dangerously overheated at temperatures that seem comfortable to everyone else. I wear a cooling vest and spray myself with water when I’m outside to keep from getting too hot. If you ever see me turning red when it’s hot, please tell a teacher. My lotions sometimes make me look greasy but don’t be afraid to hang out with me, ichthyosis is not contagious. I would appreciate it if you wouldn’t stare at me, make fun of me or leave me out because I look different and have to do things differently. God made me and he doesn’t make mistakes. And I speak for all kids who look different when I say it’s not easy looking different. I was born this way. Everyone is unique in some way right? I’d love to hear what makes you special.
If you’d like to know more about Ichthyosis or want to support research to find a cure, contact the Foundation for Ichthyosis & Related Skin Types at their website: www.firstskinfoundation.org
You are also welcome to reach out to my mom. She’s always happy to talk about her kids!
_____________________ Mom’s contact info
Thanks for reading this!
___________ Your name
My name is _________ and I’m in _____ grade this year! This is my ______ year at _______ School and I can’t wait to meet you! But I also want to give you a heads up about something special and different about me. I was born with a skin condition called ________ ichthyosis that makes my skin look different from everyone else. My skin looks scaly, like dark brown spots all over and it gets very dry and flaky. I don’t sweat so the heat really affects me. My skin only hurts when it’s dry. I have to do some things a little differently, but I am the same as you on the inside. I love [list activity, pets, other things that make you happy]. My [tell them a little bit about your family members and attach a picture ex: I’m the kid on the right in the picture ________ is the goofball on the left.]
I’m sorry if I ever have to sit out on physical activities or leave class to cool off. I can get dangerously overheated at temperatures that seem comfortable to everyone else. I wear a cooling vest and spray myself with water when I’m outside to keep from getting too hot. If you ever see me turning red when it’s hot, please tell a teacher. My lotions sometimes make me look greasy but don’t be afraid to hang out with me, ichthyosis is not contagious. I would appreciate it if you wouldn’t stare at me, make fun of me or leave me out because I look different and have to do things differently. God made me and he doesn’t make mistakes. And I speak for all kids who look different when I say it’s not easy looking different. I was born this way. Everyone is unique in some way right? I’d love to hear what makes you special.
If you’d like to know more about Ichthyosis or want to support research to find a cure, contact the Foundation for Ichthyosis & Related Skin Types at their website: www.firstskinfoundation.org
You are also welcome to reach out to my mom. She’s always happy to talk about her kids!
_____________________ Mom’s contact info
Thanks for reading this!
___________ Your name
Sample Letter to Congress
[Date]
The Honorable ____________________________
House (or Senate) Office Building
Washington, DC 20515 (20510)
Dear Congressman/Senator ______________:
As a constituent who votes, I am writing about an issue that is very important to me: medical research funding. Specifically, I am writing to urge you to support an increase in funding for the National Institutes of Health (NIH) during fiscal year 20__.
I [my child, my friend, etc] have a rare skin disease called ichthyosis. Ichthyosis is a family of genetic skin diseases characterized by severely dry, thickened, scaling skin. Symptoms of ichthyosis range widely depending on the variety of ichthyosis involved. My ichthyosis is [personalize]. As you can imagine, life with this disorder comes with many physical and social complications.
Research at the NIH is key to making much-needed progress in treatments and, hopefully, a cure for ichthyosis. In the past, increases in the NIH budget have led to great advances in genetic research for some of the Ichthyoses. A recent lack of funding is causing many researchers to leave the field, while existing investigative labs are struggling to operate or recuperate from the loss.
[personalize with a few sentences]
Investing in research at NIH will lead to better treatments and better lives for patients living with rare diseases, like ichthyosis. Please support an increase in NIH funding, so that people like me can have hope that someday a cure will be found.
Thank you for your consideration.
Sincerely,
Your name
Your address
The Honorable ____________________________
House (or Senate) Office Building
Washington, DC 20515 (20510)
Dear Congressman/Senator ______________:
As a constituent who votes, I am writing about an issue that is very important to me: medical research funding. Specifically, I am writing to urge you to support an increase in funding for the National Institutes of Health (NIH) during fiscal year 20__.
I [my child, my friend, etc] have a rare skin disease called ichthyosis. Ichthyosis is a family of genetic skin diseases characterized by severely dry, thickened, scaling skin. Symptoms of ichthyosis range widely depending on the variety of ichthyosis involved. My ichthyosis is [personalize]. As you can imagine, life with this disorder comes with many physical and social complications.
Research at the NIH is key to making much-needed progress in treatments and, hopefully, a cure for ichthyosis. In the past, increases in the NIH budget have led to great advances in genetic research for some of the Ichthyoses. A recent lack of funding is causing many researchers to leave the field, while existing investigative labs are struggling to operate or recuperate from the loss.
[personalize with a few sentences]
Investing in research at NIH will lead to better treatments and better lives for patients living with rare diseases, like ichthyosis. Please support an increase in NIH funding, so that people like me can have hope that someday a cure will be found.
Thank you for your consideration.
Sincerely,
Your name
Your address
Retinoid Approval Letter
To Whom It May Concern,
On behalf of the Foundation for Ichthyosis & Related Skin Types (FIRST), I am writing to advocate for insurance coverage of isotretinoin or acitretin (commonly known by the brand name Accutane and Soriatane) for individuals living with ichthyosis and related keratinization disorders.
Ichthyosis is a group of rare genetic skin disorders characterized by severe scaling, thickening of the skin, chronic inflammation, painful fissures, overheating, itching, increased risk of infection, and significant physical and emotional burden. For many patients, topical therapies alone are insufficient to adequately manage symptoms and maintain quality of life.
Systemic retinoids such as isotretinoin are widely recognized within the dermatology community as an important treatment option for certain forms of ichthyosis. Isotretinoin can help reduce excessive scaling and hyperkeratosis, improve mobility and comfort, decrease skin cracking and secondary infections, and support daily functioning. In many cases, this medication allows patients to participate more fully in school, work, and social activities.
Although isotretinoin is often associated with acne treatment, its therapeutic benefits extend far beyond acne management. Dermatologists frequently prescribe isotretinoin off-label for rare disorders of keratinization, including ichthyosis, based on established clinical practice and medical necessity. Due to the rarity of these conditions, treatment options are limited, and denying coverage may leave patients without effective systemic therapy.
We respectfully urge you to consider the following when reviewing requests for isotretinoin coverage for ichthyosis patients:
Ichthyosis is a chronic, lifelong medical condition requiring ongoing management.
Systemic retinoids are considered standard-of-care treatment for many severe forms of ichthyosis.
Coverage of isotretinoin may reduce complications, infections, hospitalizations, and overall healthcare costs associated with unmanaged disease.
Access to medically necessary treatment significantly improves patient quality of life and psychosocial well-being.
We encourage you to evaluate isotretinoin requests based on medical necessity and the clinical judgment of the treating dermatologist, rather than limiting approval solely to acne-related diagnoses.
Thank you for your consideration and commitment to supporting patients living with rare skin disorders. We welcome continued dialogue regarding ichthyosis treatment and patient care needs.
Sincerely,
Chris Boynton
CEO
Foundation for Ichthyosis & Related Skin Types (FIRST)
cboynton@firstskinfoundation.org
Consensus Recommendations for the use of retinoids in ichthyosis and other disorders of cornification in children and adolescents.
DOWNLOAD A PDF VERSION OF THIS LETTER
On behalf of the Foundation for Ichthyosis & Related Skin Types (FIRST), I am writing to advocate for insurance coverage of isotretinoin or acitretin (commonly known by the brand name Accutane and Soriatane) for individuals living with ichthyosis and related keratinization disorders.
Ichthyosis is a group of rare genetic skin disorders characterized by severe scaling, thickening of the skin, chronic inflammation, painful fissures, overheating, itching, increased risk of infection, and significant physical and emotional burden. For many patients, topical therapies alone are insufficient to adequately manage symptoms and maintain quality of life.
Systemic retinoids such as isotretinoin are widely recognized within the dermatology community as an important treatment option for certain forms of ichthyosis. Isotretinoin can help reduce excessive scaling and hyperkeratosis, improve mobility and comfort, decrease skin cracking and secondary infections, and support daily functioning. In many cases, this medication allows patients to participate more fully in school, work, and social activities.
Although isotretinoin is often associated with acne treatment, its therapeutic benefits extend far beyond acne management. Dermatologists frequently prescribe isotretinoin off-label for rare disorders of keratinization, including ichthyosis, based on established clinical practice and medical necessity. Due to the rarity of these conditions, treatment options are limited, and denying coverage may leave patients without effective systemic therapy.
We respectfully urge you to consider the following when reviewing requests for isotretinoin coverage for ichthyosis patients:
Ichthyosis is a chronic, lifelong medical condition requiring ongoing management.
Systemic retinoids are considered standard-of-care treatment for many severe forms of ichthyosis.
Coverage of isotretinoin may reduce complications, infections, hospitalizations, and overall healthcare costs associated with unmanaged disease.
Access to medically necessary treatment significantly improves patient quality of life and psychosocial well-being.
We encourage you to evaluate isotretinoin requests based on medical necessity and the clinical judgment of the treating dermatologist, rather than limiting approval solely to acne-related diagnoses.
Thank you for your consideration and commitment to supporting patients living with rare skin disorders. We welcome continued dialogue regarding ichthyosis treatment and patient care needs.
Sincerely,
Chris Boynton
CEO
Foundation for Ichthyosis & Related Skin Types (FIRST)
cboynton@firstskinfoundation.org
Consensus Recommendations for the use of retinoids in ichthyosis and other disorders of cornification in children and adolescents.
DOWNLOAD A PDF VERSION OF THIS LETTER
