Disease/Disability Information

Provides awareness, education, nutrition, coping strategies, conferences and community outreach. Also offers referrals and educational information on Lupus.

Nevada's Central Directory for Early Intervention provides information, resources, and referral services to inform and educate families of infants and toddlers with disability, disabilities or special health care needs, and the general public.

Offers compassionate counseling by registered nurses, respiratory therapists, and certified tobacco treatment specialists.

Provides a nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer and saving lives through research, education, advocacy, and service.

Provides a nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer and saving lives through research, education, advocacy, and service.

Diabetes prevention through walking club, nutrition programs, and exercise program.

HSI's mission is to research, develop, and implement evidence-based learning systems for people with disabilities and for those who support them. HS-WARC encourages every individual served to discover and lead a fulfilling and independent life. They do this by delivering the best training, development, and assessment services.

Educational, Emotional, and Financial Support to families who have a child diagnosed with cancer.

Fights lung disease in all its forms, with special emphasis on asthma, tobacco control and environmental health.

SNBFON is a nonprofit organization within the NV sickle cell community. We believe at times our SC warriors may be weakened physically, mentally and spiritually but through a strong community-based organization they possess the ability to tap into strength, hope, faith. 

Our mission is to  improve not only the quality but quantity of life for children and adults living with Sickle Cell (SC) and related blood disorders. We desire for them to live longer and without limitations.

The effects of SC are also experienced by parents, family, friends, and community members. Therefore, we encourage participation from anyone with a passion and desire to grow and develop opportunities to decrease the stigmas & misunderstandings related to SC. 

A special focus is on the SC teen population who are transitioning to adult healthcare and the adult population currently struggling to access quality healthcare from providers knowledgeable in current evidence based SC treatments.

Our mission is to #MakeSickleCellPopular by increasing awareness, educating, and advocating for long term changes for the SCD population of Nevada to improve Equity and access to care for those affected by SCD and other Rare Diseases while also addressing health disparities. 

Our vision is to be a community leader in advocating for those affected by Sickle Cell. Our vision will be achieved by bringing communities together through social events that provide support, education, resources and awareness for Sickle Cell Disease.

Promotes the health and well-being of people with Down syndrome and their families through evidence-based care, innovative research opportunities, and collaborative educational experiences.

Services Include:

• Care coordination
• Resources referrals
• Participation in research studies

Offers one-on-one support providing information on arthritis including access to care, in-home services, insurance/disability questions, support groups, transportation, and other related topics.

We offer a variety of free programs, services, and resource information to help families cope with all aspects of the disease and its progression.

Information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.

Answer questions that cancer patients and caregivers may have. Serve as a resource, guide, and sounding board for those who need emotional support.

Are you taking care of an adult relative, partner, or friend? The Healthy Living Institute understands how difficult care giving can be and the challenges it holds. Join us for a 6 week workshop. Caregivers will be able to better manage emotions and increase self confidence.

Addresses the health, safety, and well-being of all infants, children, adolescents, and young adults. See also Prevention of Pediatric Overweight and Obesity at https://publications.aap.org/pediatrics/article-abstract/112/2/424/63348/Prevention-of-Pediatric-Overweight-and-Obesity?redirectedFrom=fulltext.

Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Serves children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Provides comprehensive online information including six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

Find a Provider: Directory of experts in Tourette Syndrome that can be filtered by age group, clinical expertise (specialty), and location.

Tourette Syndrome Centers of Excellence: List of Centers of Excellence in the care of Tourette Association, recognized by the Tourette Association of America as promoting the highest level of care, research, education & training, and advocacy & awareness for these conditions.

Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Provides online support groups and parent community options across the country.

National

A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities. Provides the Drooling Impact Scale at https://www.aacpdm.org/UserFiles/file/The-Drooling-Impact-Scale.pdf.

AACPDM Medical Professional Directory offers patients and families the option to search for members by locations, specialty and/or patient type.

The website also offers continuing education for professionals and educational resources for individuals and families.

Funds research to improve treatment and find a cure for Propionic Acidemia. Offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

Works to cure cystic fibrosis and provide all people with CF the opportunity to lead long, fulfilling lives. Conducts research on cystic fibrosis.

The CF Foundation funds research and drug development and provides CF-related resources for families and medical providers.

[https://www.cff.org/Assistance-Services/About-Compass/What-Is-Compass/ Compass] is a personalized one-on-one service to help with the insurance, financial, legal, and other issues faced by people living with CF, their families, and their care teams.

The [https://www.cff.org/ccd/ CF Care Center] finder is a web-based location finder for cystic fibrosis accredited care centers nationwide. The Cystic Fibrosis Foundation provides funding for and accredits more than 110 cystic fibrosis care centers and 55 affiliate programs nationwide, including 96 programs for treating adults with CF.

Offers online courses, resources, advocacy, and support groups for professionals, parents, and others interested in helping individuals with Sensory Processing Disorder.

Provides information about Fabry disease, support group, discussion page, information about research, links to resources, and more.

Supports research, public health education, professional health education, patient services, community services, and global organizations. National nonprofit with chapters in multiple states. 

Advocates for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.

Offers support to children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families.

Online Resources Include:

• A variety of clinical and patient resources
• Educational events for clinicians
• Find a Pediatric Endocrinologist: Search the Pediatric Endocrine Society membership list.
• Upcoming Camps: Directory of specialty camps for kids, including Diabetes Camps, Turner Syndrome Camps, and Transgender Youth and Teen Camps. Not run or endorsed by the Pediatric Endocrine Society.

Supports people living with epilepsy, families, friends, and caregivers. Many programs, including support groups, are available through local Epilepsy Foundations, which can be located here.  

Services Include:

• Education materials about epilepsy, types of seizures, triggers, diagnosis, treatment, etc.
• National policy and legal advocacy
• Research and funding
• Public awareness
• Training programs
• 24/7 information helpline
• Kids Crew- for kids ages 14 and under
• Summer Camps

Provides training and education on hearing, hearing loss, and hearing aids.

• Disease/Disability Information
• Health/Disability Related Support Groups

Protects America from health, safety, and security threats, both foreign and within the U.S. Conducts critical science and provides vital information that protects the nation against dangerous health threats, and responds to emergencies when they arise. Visit website for the most up to the minute information on COVID-19.COVID-19 UPDATE: The Vaccine Finder website is a free, online service where users can search for locations that offer vaccinations. The Website was developed by CDC and partners such as clinics, pharmacies, and health departments to provide accurate and up-to-date information about vaccination service. There is now a texting option and Hotline number in both English and Spanish for finding a vaccine. The Hotline number is in place to ensure that people who aren't online (as well as people who don't speak English or Spanish) have access to all the information they need.The CDC announced on August 3, 2021 a limited eviction moratorium, for renters living in communities experiencing substantial or high transmission of COVID-19, covering an estimated 80% of all US counties, and 90% of all renters through October 3, 2021. Find information about the CDC-Kaiser Permanente adverse childhood experiences (ACE) study at https://www.cdc.gov/violenceprevention/aces/about.html.

• Communicable Disease Control
• Vaccine Information

• Internet Information Resources
• Disease/Disability Information
• Specialized Information and Referral
• Medical Information Services

• Specialized Information and Referral
• Medical Care Expense Assistance

NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Improves the quality of life for all people affected by lupus through programs of research, education, support, and advocacy. The Foundation makes continuous updates to its COVID-19 vaccine and lupus FAQ and COVID-19 and lupus FAQ pages.

• Health/Disability Related Support Groups
• Disease/Disability Information
• Voluntary Health Organizations

Chapter Finder: Find support and connection in your community.

Provides information for individuals, families, and professionals regarding heart-related concerns. Includes general health information, information regarding specific conditions, and information about CPR and First Aid training.

The American Stroke Association (https://www.stroke.org/) is a division of the American Heart Association focused on stroke prevention and treatment.

Works to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information and Referral
Specialized Information and Referral

Nationwide community-based voluntary organization dedicated to eliminating cancer as a major health risk through research, education, advocacy.

Provides advocacy, education, information and referral, support for the Autism community at national, state and local levels through a nationwide network of Affiliates.

Provides ongoing support and direct services to individuals with multiple sclerosis.

Services Include:

• Individual Advocacy
• Information and Referral
• Equipment Distribution Program by application

Supports people with inherited blood disorders through research, education, and advocacy. Provides chapters throughout the US.

Services Include:

• Information about bleeding disorders, blood types, and blood safety
• Online and in-person educational events and workshops
• Advocacy information
• [Camp Locator] helps families find a camp for a child with a bleeding disorder, siblings, or the family.

An advocacy, education and support organization for individuals with X and Y chromosome variations and their families. This includes those with Klinefelter syndrome (47,XXY), Trisomy X (47,XXX), 47,XYY, 48,XXYY, 48,XXXY and related genetic conditions.

The Stuttering Foundation provides resources, services and support to those who stutter and their families as well as support for research into the causes of stuttering.

Free packets of informative brochures, referral lists for fluency specialists and a catalog of resources are available.

The Foundation publishes 30 books, 41 DVD videos and 26 brochures on stuttering. Over 800,000 publications are distributed each year to those who stutter, their families, speech language pathologists, pediatricians, family physicians, clinics, day care centers, libraries and others concerned with the problem of stuttering.

Provides support and funding for type 1 diabetes research. Local JDRF chapter serves as the hub of JDRF information and events.

Services Include:

• Informational Guides
• Virtual community
• Local chapters
• Fundraising and social events

National Eye Institute is the principal agency for conducting and supporting vision research aimed at improving the prevention, diagnosis, treatment and rehabilitation of diseases that affect the eye and vision

The MSUD Family Support Group membership includes families and professionals worldwide.

Services Include:

• Providing opportunities for support and personal contact for those with MSUD and their families.
• Distributing information and raising public awareness of MS
• Strengthening the liaison between families and professionals.
• Encouraging newborn screening programs and research for MSUD.

The Childhood RND Educational Foundation is a 501(c)(3) non-profit organization dedicated to educating health professionals and families who deal with amplified musculoskeletal pain syndromes (AMPS) such as fibromyalgia, complex regional pain syndrome (CRPS), RSD, RND, neuropathic pain and myofascial pain. Services include:
-Educational materials about a variety of pain issues
-[https://stopchildhoodpain.org/faqs/what-hospitals-offer-this-treatment-program/ Directory of pediatric AMPS treatment programs.]

Provides online resources and information related to Attention Deficit Hyperactive Disorder (ADD and ADHD) for children, adults, parents, schools, and more.

Provides resources for individuals with thinking and learning differences, including ADHD, dyslexia, and dyscalculia. Information for parents, educators, and young adults. Also offers a workplace program for individuals in the workplace.

Offerings include articles and online resources, information about how to get assistance, and an online community.

Provides resources, information, and support groups for families and individuals with Urea cycle disorders (UCDs).

UCD Family Camps: Hosts annual camps for families affected by a Urea Cycle Disorder. UCD Family Camps are held in different locations across the US so that all families around the country may have an opportunity to attend. Camps are 100% free of charge to UCD families and siblings (any age). All costs of foods (low-pro), lodging, and shuttling to and from airport to camp site is provided as well.

Offers support groups for families, friends, clinicians, researchers and others whose lives have been touched by a Fatty Acid Oxidation disorder. Provides education, grief support, and networking forums.

Helps patients and families affected by Homocystinuria (HCU), Methylenetetra hydrofolate reductase (MTHFR) and selected cobalamin deficiencies by providing educational resources and community connections.

Provides information about PKU, research, advocacy, and resources.

Services Include:

• Find a PKU Clinic by state, zip code, or map.
• PKU Guide for New Parents
• PKU Patient Registry
• Clinical Trial Locator
• Support Programs
• Educational Videos
• Insurance Coverage 101
• School Information
• Cooking & Food

The goals of the National Urea Cycle Disorders Foundation (NUCDF) are:

• To provide guidance and information to families and others affected by urea cycle disorders.    
• To create a caring community, networking families together for support.    
• To educate healthcare professionals on the identification, diagnosis and treatment of UCD.      
• To stimulate and support research which leads to improved quality of life for today and a CURE for tomorrow.    
• To increase public awareness on the existence of UCDs so that no child or adult ever goes undiagnosed.    
• To educate legislators on the needs of children, adults and families affected by these rare disorders.

AIDS info is a U.S. Department of Health and Human Services (DHHS) project providing information on HIV/AIDS clinical trials and treatment. It is the result of merging two previous DHHS projects: The AIDS Clinical Trials Information Service (ACTIS) and the HIV/AIDS Treatment Information Service (ATIS).

AIDS info is a central resource for current information on federally and privately funded clinical trials for AIDS patients and others infected with HIV. AIDS clinical trials evaluate experimental drugs and other therapies for adults and children at all stages of HIV infection -- from patients who are HIV positive with no symptoms to those with various symptoms of AIDS.

Provides awareness, prevention, and treatment. Under its guiding principles - Education, Advocacy, Research, and Support - the ATA offers prevention programs in schools, urges governmental and private organizations to support hearing conservation, funds the nations brightest researchers, and facilitates self-help groups around the country.

The Foundation aims to improve outcomes for individuals with OCD and related disorders by:

• Providing resources and support for those affected by OCD, including individuals with OCD and related disorders, their family members, friends, and loved ones.
• Promoting awareness about OCD and related disorders to the OCD community and the general public.
• Increasing access to effective treatment through:
  • Educating mental health professionals about evidence-based treatments.
  • Providing a forum for professional collaboration and networking.
  • Supporting research into the causes of and treatments for OCD and related disorders.

Visit https://iocdf.org/find-help/ for help finding providers for patients with OCD,

Provides education for families in identifying development milestones in children from birth to 5 years old. Provides resources and supports (WIC, Early Childhood Intervention, Home-visiting, and Education Materials) for families who may have concerns and how to reach out to a local healthcare provider. See the Pediatric Developmental Screening Flowchart at https://www.cdc.gov/ncbddd/autism/documents/Screening-Chart.pdf .

Involved in the research and development of evidence-based behavioral interventions and measurement tools designed to improve care for families and children with autism spectrum disorder (ASD). Also provides the RUBI Autism Network Parent Training program.

Raises awareness of 24 hour posture care management, as a non-invasive, caregiver and family empowering approach improving the quality of life for persons with neuromuscular impairments affecting their motor control and posture. 

Tamara Kittelson, MS, OTR/L, ATP/SMS
Executive and Project Director