Resources: Community Resources

Discover a wealth of resources curated by our community.

Our collection includes valuable information and materials created in collaboration with parents, doctors, and researchers. Stay informed, empowered, and connected with the latest insights and resources related to Lesch-Nyhan syndrome.

If you have something you’d like to add, just let us know!

Community Resouces

You are here (read below)

Global Contacts

Lesch-Nyhan Community Resources

General Lesch-Nyhan Information

Teeth Removal

Behavior Help

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

  • 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.

Diagnosis

For Doctors

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.

Partnerships

Informational PDF

Child with Lesch-Nyhan in a playground swing smiling

Guides, videos and other community shared items

Videos

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.

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.

“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.”

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