National Support Services, Disab/Diag

GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic disease. In addition to website-based information you may contact a GARD Information Specialist. Also, GARD develops guides with tips on general topics, important resources, and answers to questions that patients, their families, and friends often ask us.

GARD is a program of the National Center for Advancing Translational Sciences (NCATS) and is funded by two parts of the National Institutes of Health (NIH): NCATS and the National Human Genome Research Institute (NHGRI).

A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives. Toll free help lines, Ask the Expert emails, Connect with a Family, and more.

Additional Family Resources: Medical Cards, Family Map, CoRDS Registry, CdLS Discussion Board

M - F 8:30 - 5 ET

• Incidental Medical Expense Assistance

Mission: Propionic Acidemia Foundation is dedicated to finding improved treatments and a cure for Propionic Acidemia by funding research and providing information and support to families and medical professionals.

Organization offers educational resources for families and patients, a patient registry, conferences and trainings, online support groups, and more.

• Specialized Information and Referral
• Disease/Disability Information
• Internet Information Resources
• Research Funds
• Health/Disability Related Support Groups

• Planning/Coordinating/Advisory Groups

• Specialized Information and Referral
• Health/Disability Related Support Groups

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

The Association for Creatine Deficiencies’ mission is to provide patient, family, and public education, to advocate for early diagnoses, and to promote and fund medical research for treatments and cures for Cerebral Creatine Deficiency Syndromes (CCDS).

Offers information for patients and families, including online support groups, for clinicians, and about research.

Provides a comprehensive resource for accurate, up-to-date information, support, and acceptance to maximize the quality of life for individuals with 5p- and their families. This syndrome is a chromosomal deletion disorder that results in intellectual and developmental issues in children. Also supports five Regional Family Get-Togethers per year.

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

CareConnectPSS: Offering care management by the Sanofi Genzyme drug company. Information about Fabry disease, a genetic disorder known as lysosomal storage disorders, from Sanofi Genzyme, a biotech company.

Provides the latest autism science and information, funding research into the causes, prevention, treatments and cures for autism, awareness of autism spectrum disorders, advocacy for the needs of individuals with autism and their families and an online store.

• Specialized Information and Referral
• Disease/Disability Information

Empowers the cancer community to address the unmet needs of cancer survivors. To do so, collaboration, knowledge-sharing, and partnership are encouraged. Develops evidence-based solutions to address both the common and unique problems survivors are facing around the world.

• Specialized Information and Referral

Emotional and informational support for families of children who have special needs, Parent to Parent-USA (P2P-USA) is a national nonprofit organization committed to assuring access and quality in Parent to Parent support across the country. This site highlights state's organizations that have parent to parent support as a core program and are committed to implementing evidence-based practices.

• Health/Disability Related Support Groups
• Disease/Disability Information
• Medical Care Expense Assistance

• Health/Disability Related Support Groups

Providing resources to healthcare providers on environmental health concerns and benefits. Asthma study,"Integrating environmental management of asthma into pediatric health care."

Mission of Graham's Foundation is to support, comfort, inform, and guide families who experience a premature birth.

Programs:

• NICU, transition home, and remembrance care package programs
• Trained preemie parent mentors available 24/7 via email, phone, and text
• MyPreemie, the market-leading app for parents of premature babies
• Online communities with tens of thousands engaged parents making new connections

Parent-led non-profit organization that responds to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.

• Assistive Technology Expense Assistance
• Disease/Disability Information

Resources and support for individuals with limb loss and their families. Advocacy information and resources for state and national advocacy.

Paddy Rossbach Youth Camp: A 6-day traditional summer camp experience for children with limb loss and limb difference to increase self-confidence and self-esteem through a traditional and supportive summer camp experience. The Amputee Coalition arranges travel plans for all camp attendees. Cost: none! thanks to sponsors and donors. Opportunities for camp counselors ages 18-19 and age 20 and above.

2016 dates July 8 - 16.

Health information: mental health, getting help, statistics, clinical trials; outreach, research, opportunities for funding, labs at NIMH.

Information about Fabry disease, research and clinical trials information, funding programs, and more. Programs, include:

• Annual conference
• Family camp
• Personal support
• Research and educational information

Provides, information and support for parenteral nutrition consumers (HPN or home IV-fed patients) to improve their health and quality of life. Also offers a national list of Donated Equipment and Supplies and virtual support groups.

SMA, part of the Childhood Anxiety Network, is a nonprofit organization dedicated to providing information, resources and support to those impacted by a child with the anxiety disorder known as Selective Mutism (SM).

SMA is the nation’s premier resource for information on SM. Provides a network of professionals, families and affected individuals across the world who understand the struggle of living in silence.

SMA Support Groups by State: list of SMA support groups.

Find a Treating Professional: Directory of professionals that have joined the SMA community.

Delivering comprehensive support resources, and driving research to accelerate the discovery of DM therapies. A digital library of educational videos. Find a doctor nationwide locator. Find a support group, including a virtual group. Anesthesia guidelines. Founded by families with DM seeking to help one another.

AKA Myotonic Dystrophy Foundation

A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

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

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.

Provides support for people with Marfan Syndrome as well as family members. Meet as needed. Make referrals to a national organization. Refer people to other with Marfan. Moral support.

Marfan's Syndrome is an inherited condition of the connective tissues, bones, muscles, ligaments and skeletal structure whose symptoms include an irregular and unsteady gait and a tall, lean body type with long extremities including fingers and toes. There is an abnormal joint flexibility, flat feet, stooped shoulders, dislocation of the optic lens, and a weakened aorta.

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

National state-based database of mental health professionals. Detailed professional listings for Psychologists, Psychiatrists, Therapists, Counselors, Group Therapy and Treatment Centers in the United States and Canada.

Search by city, insurance, issues, sexuality, gender, age, language, faith, types of therapy, online therapy, psychiatrists, treatment centers, and support groups.

Psychology Today's Therapy Directory is run here Sussex Directories.

Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Chapter Finder: Find support and connection in your community.

A national organization serving children, individuals and families affected by Tourette Syndrome (TS) and other tic disorders. Comprehensive online information includes 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.

A national program dedicated to the interests of brothers and sisters of people with special health and developmental needs.

A Kindering Center program