Community Resources

The Lesch-Nyhan Community Resource Page brings together the most trusted information and organizations dedicated to understanding and supporting those affected by Lesch-Nyhan and related variants. Here, you’ll find a collection of helpful links to global research groups, advocacy organizations, scientific papers, educational videos, and articles. Whether you’re a family member, clinician, or researcher, this page serves as a hub for learning, connection, and collaboration across the Lesch-Nyhan community.

Community Resouces

You are here (read below)

Global Contacts

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Two hands clasped together, with one hand grasping the wrist of the other, against a blurred sunset background, symbolizing support and community for Lesch-Nyhan Disease.

Lesch-Nyhan Community Resources

General Lesch-Nyhan Information

Teeth Removal

Behavior Help

Medical Procedures

Health

  • https://yoursexualhealthtoolkit.org/how-to-use-this-toolkit/

    Note for Families and Caregivers:
    This Sexual Health Toolkit was created to provide supportive and educational information around sexual health, relationships, and body awareness for individuals living with a disability. We recognize that families and caregivers have diverse values, beliefs, and comfort levels around these topics.

    We encourage you to preview the materials first to ensure they align with your values and to help determine whether the content is age-appropriate and supportive for your loved one.

    Our goal is to offer tools that respect each family’s unique needs while promoting dignity, safety, and well-being. See link to learn more about who should use this toolkit and how to use it. There are special tips at the end of this page for youth, parents and caregivers, and disability support professionals.

Social

  • Our Odyssey We connect young adults impacted by a rare or chronic
    condition through accessible & inclusive social experiences

  • https://www.bestbuddies.org/ Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, inclusive living, and family support for individuals with intellectual and developmental disabilities (IDD).

  • https://www.specialolympics.org/ Every day, Special Olympics events are taking place around the globe transforming the lives of millions of individuals with intellectual disabilities both on and off the playing field.

  • Rays for Rare Whether it is one of 7,000 rare diseases, including all forms of pediatric cancer, or the survivor of a tragic accident all of the families we support have a medically fragile child. What does that mean? A child who is medically fragile requires daily care by specially trained caregivers (above and beyond typical parenting).

  • Overjoyed Accessible Gaming — Our Odyssey Overjoyed is a $5 Microsoft Store accessibility app for playing video games on PC, Nintendo Switch, Xbox Game Pass, and PlayStation Plus Premium using only mouse or eye gaze hardware.

Diagnosis

For Doctors

Research

LND Websites

Social Media

Facilities/Organizations

Caregiver Support/Guidance/Advocacy Organizations

  • Courageous Parents Network For more than a decade Courageous Parents Network, a nonprofit organization, has oriented, equipped and empowered those caring for children with a serious medical condition.

  • Remember the girls is committed to advocating for females impacted by X-linked conditions.

Medicaid Waivers

  • Katie Beckett waiver, many states in the US have Medicaid waivers that allow children under the age of 19 who have complex medical needs or long-term disabilities to become eligible for Medicaid coverage. https://www.kidswaivers.org/

Financial Help

  • Help Hope Live Medical fundraising for the expenses insurance doesn’t cover

  • PAF This division of PAF offers one-on-one personal advocate services to patients battling serious disease.  Our staff helps seek out options to overcome insurance denials, healthcare access issues and medical debt crisis challenges. 

  • HealthWell Foundation When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses for essential treatments and medications.

  • Love Never Sinks Financial Assistance Love Never Sinks (501c3) aims to help families and individuals with Lesch Nyhan Disease (Syndrome) obtain the equipment and services they need to improve access to their environment and increase their quality of life. We personally understand how difficult it is to get the things we need for our children, and we will try our best to connect and provide you with the items you request.

Partnerships

Informational PDF

Child with Lesch-Nyhan in a playground swing smiling
Infographic explaining Lesch Nyhan Disease, including genetics, prevalence, symptoms, and clinical features with some diagrams, text, and logos.

Guides, videos and other community shared items

Videos

Videos: Medical

Commonly Recommended Products

You’ll come to find the products that work best for your child over time, but these are some of the most commonly recommended products among LND families.  Some of these items, like products from Special Tomato and Firefly, may be covered by your insurance.

  • Billy Footwear: BILLY Footwear incorporates zippers that go along the side of the shoes and around the toe, allowing the upper of each shoe to open and fold over completely. This allows the wearer to step into the shoe while wearing their AFO, then just zip it closed.

  • EazyHold: Soft silicone that attaches to many regular items and helps children and adults grip the item more securely.

  • Elbow Immobilizers: Most commonly used to prevent the hand from getting to the face during times of self injury.

  • Firefly Products: Clinically sound postural support solutions to enhance participation in everyday activities.

  • Special Tomato: These pediatric adaptive products incorporate soft design and comfort while providing the correct positioning and support children need.

  • Freedom Concepts Inc.: Featuring items like an adaptive bicycle, each Freedom Concepts product is thoughtfully designed and hand built to accommodate the needs of individuals living with limited mobility.

More Links to Tools and Equipment

Despite the challenges, parents agree their children with Lesch-Nyhan are a joy. Here are frequent ways parents describe them, which seem to be consistent personality traits among most children with LNS.

A graphic illustration shows a DNA double helix unraveling into individual DNA strands, with an arrow pointing downward to the text '1 in 380,000-500,000' in red.
A woman with long dark hair and a patterned black and white dress is leaning over and smiling at a young boy sitting in a stroller. The boy is smiling, wearing a white jacket, blue pants, and tan boots. They are outside, near green plants and a slide.

“They are loving and full of smiles for strangers and friends alike.”

“They have strong auditory comprehension and understand everything said to them.”

“They are very outgoing and love being social.”

“They have a witty sense of humor.”

“They are so sensitive to the feelings of others, always asking “are you ok?” at just the right time.”

“They are warm and lovable.”

“They are highly socially intelligent.”

“They remember everything they learn and love to share their knowledge.”

Illustration of a zebra wearing sunglasses with a badge reading 'Love Never Sinks' and the acronym 'LNS' for raising awareness for Lesch-Nyhan. The image includes a circular text that says 'Vets Inks.org Lesh-nyhan Aware' and small red hearts.

Advice from Parents and LND Individuals

“Be prepared.

Just because today I'm smiling like an angel, in an hours time I might be trying to destroy myself Knowing that you won't get upset with me, that you will help me no matter what...

In EVERY LN person is a total angelic personality - you won't ever meet nicer people. Although sorry I'm a bit biased 😂😂” - John, 41 year old with Classic LND

“My main advice would be don't Google it and don't fully believe what the doctors etc say to you. We were given the absolute worst case scenario with Harley and the things we read on Google, broke our hearts. But, the young lad he's become is completely different and I wouldn't change him for the world.  Also, don't forget about this group. Everyone will give you amazing advice and support and most important of all.  Never forget that Love Never Sinks ⚓️❤️”- Stephen, parent of 9 year old with LND

Black and white drawing of a teddy bear with a small Love Never Sinks Lesch-Nyhan emblem on its chest that has a cross and the letters 'LHS' with an anchor.
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