Who Can Help

U.S. Department of Education and Office of Special Education & Rehabilitation Services, Clearinghouse on Disability Information
(202)245-7307 (for information on disability programs and legislation)

Social Security Administration:
1-800-772-1213
http://www.ssa.gov
For information on SSI benefits for children with disabilities.

National Dissemination Center for Children with Disabilities:
1-800-695-0285
http://www.nichcy.org
For information, referrals and respite care.

Administration for Children and Families, Department of Health and Human Services:
(202)401-9215
http://www.acf.hhs.gov
For information on respite care in your area.

March of Dimes
(914)997-4488
http://www.marchofdimes.com
For educational materials and referrals.

Resources for Children with Special Needs, Inc.
(212)667-4650
http://www.resourcenycdatabase.org
For information on support in the NYC area.

Federation for Children with Special Needs
(617)236-7210
http://www.fcsh.org
For literature and referrals.

Ronald McDonald House Charities
One Kroc Drive
Oak Brook, IL 60523
Phone: 630-623-7048
Fax: 630-623-7488
E-mail: info@rmhc.org
http://www.rmhc.org

Father Network
(425)653-4286
http://www.fathersnetwork.org
For information and support for fathers of children with special needs.

Nation Health Information Center
1-800-336-4797
http://www.health.gov/nhic
For phone numbers and websites of more than 1,400 health-related organizations.

Disability Workshop Catalog
(360)694-2462
http://www.peakspress.com


Individual websites for disorders:

National AIDS Hotline
1-800-232-4636
http://www.aidshotline.org

American Academy of Allergy, Asthma and Immunology
(412)272-6071
http://www.aaaai.org

Asthma & Allergy Foundation of America
1-800-7ASTHMA
http://www.aafa.org

National Allergy and Asthma Network Mothers of Asthmatics
1-800-878-4403
http://www.aanma.org

Jewish Medical and Research Center
1-800-222-LUNG
http://www.njc.org

Autism Society of America
1-800-3AUTISM
http://www.autism-society.org

National Cancer Institute
1-800-4CANCER
http://www.cancer.gov

Celiac Sprue Association
1-877-CSA-4CSA
http://www.csaceliacs.org

United Cerebral Palsy
1-800-872-5827
http://www.ucp.org

Cystic Fibrosis Foundation
1-800-FIGHT-CF
http://www.cff.org

American Association on Intellectual and Developmental Disabilities
1-800-424-3688
http://www.aamr.org

Voice of the Retarded
1-877-399-4VOR
http://www.vor.org

Juvenile Diabetes Research Foundation
1-800-533-CURE
http://www.jdrf.org

National Down Syndrome Society
1-800-221-4602
http://www.ndss.org

Epilepsy Foundation of America
1-800-332-1000
http://www.epilepsyfoundation.org

The National Fragile X Foundation
1-800-688-8765
http://www.fragilex.org

Alliance of Genetic Support Groups
(202)966-5557
http://www.geneticalliance.org

Deafness Research Foundation
(212)328-9480
http://www.drf.org

Arthritis Foundation
1-800-283-7800
http://www.arthritis.org

American Speech-Language-Hearing Association
1-800-638-8255 (voice or TDD)
http://www.asha.org

Muscular Dystrophy Association
1-800-572-1717
http://www.mda.org

Unified to Support Metabolic Disorders in America
(281)250-9078
http://www.usmd-pku.org

Sickle Cell Disease Association of America
(410)528-1555
http://www.sicklecelldisease.org

Spina Bifida Association of America
1-800-621-3114
http://www.sbaa.org

Thalessemia Action Group and Cooley's Anemia Foundation
1-800-522-7222
http://www.thalessemia.org

American Council of the Blind
1-800-424-8666
http://www.acb.org


If anyone has any helpful links, numbers or information available, I will gladly add it here.

I think this is a good idea!!

If anyone has websites or numbers I can add to the OP, I gladly will.

You did a great job.... I can start compiling the numbers for each states early intervention...

Quoting Jamils_ mommy:“ You did a great job.... I can start compiling the numbers for each states early intervention...”

That would be fantastic.

How about Ronald McDonald House Charities?
They are a great resource if your child requires a hospital stay.

Quoting Mer is a Mean Girl:“ How about Ronald McDonald House Charities? They are a great resource if your child requires a hospital stay.”

Good thinking. Ill add that now.

Thanks for this

Quoting Jamils_ mommy:“ You did a great job.... I can start compiling the numbers for each states early intervention...”

yup, really agreat job

what about mums? they have a great monthly news letter to help u connect with other families.

Quoting Konner*Gracies mum[GDS]:“ what about mums? they have a great monthly news letter to help u connect with other families.”

sorry.... netnet.net/mums/ ...i forgot the link. you have to fill out a long form but for parents like me, that have children with very rare genetic disorders it great!

Another one to add to the list is Pathways. Pathways Awareness is uniquely dedicated to increasing knowledge about the gift of early detection and the benefit of early therapy for infants and children with early delays. We honor and support their parents by providing knowledge, information and a sense of community as they guide their children on life’s journey. Our website can be found at http://www.pathwaysawareness.org/

Quoting Pathways Awareness:" Another one to add to the list is Pathways. Pathways Awareness is uniquely dedicated to increasing knowledge ... [snip!] ... of community as they guide their children on life’s journey. Our website can be found at http://www.pathwaysawareness.org/"

Pathways is my savior.I absolutely loooove Pathways-my son however hates going there, but who cares I love it,lol

I'm planning to attend a CHADD meeting this month.
www.chadd.org

Children and adults with ADD.

This is a Laryngomalcia Support thread its a breathing disorder sort of assuming this is still updated

http://www.copingwithlm.org/