Resources
The following resources have been identified as being helpful for many families. They are provided here to assist in your journey.
The First 100 Day Journey with CLS – This is a guide to navigating the first 100 days after receiving a Coffin-Lowry Syndrome diagnosis. The guide is in a checklist format providing steps you can take to help your child thrive as well as inform you of resources available to assist along the way. This is an exhaustive list and all steps may not be applicable to everyone.
Transition to Adulthood contains a guide for the transition of your loved one with CLS from adolescence to adulthood. The guide is a checklist format to help your child prosper as you plan for next steps after they complete formal education through the school system.
The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses was developed by the National Alliance for Caregiving in partnership with Rare Global Genes – Allies in Rare Diseases.
A community resource provided by the Academy of Special Needs Planners – great all-purpose site. Topics include Estate Planning, Health Care, Financial Planning, Public Benefits, Settlement Planning, SSI/SSDI, Special Needs Trusts, ABLE Accounts as well as others.
Drug Interaction Checker. Check interactions with multiple drugs, vaccines, supplements, alcohol, food and diseases.
Not all drugs interact, and not every interaction means you must stop taking one of your medications. Always consult your healthcare provider about how drug interactions should be managed before making any changes to your current prescription. Type in combinations of drugs and see how they interact with each other; the site will also tell you what foods interact with those same drugs.
A comprehensive information guide about sleep disorders. Descriptions, symptoms, causes, treatments of various sleep disorders like Sleep Apnea, night terrors, snoring, restless legs and narcolepsy.
National Organization for Rare Disorders (NORD) advances practical, meaningful, and enduring change so people with rare diseases can live their fullest and best lives. Every day, we elevate care, advance research, and drive policy in a purposeful and holistic manner to lift up the rare disease community.