Resources
PUBLICATIONS
This ultra-rare disorder, caused by variations on the HNRNPH2 gene, was first identified by Drs. Jennifer Bain and Wendy Chung, who published the first paper on the disorder in the American Journal of Human Genetics in September 2016. Since then, there are several other publications which can be found on our Publications Page by clicking on the following link:
https://yellowbrickroadproject.org/pages/published-studies-and-papers
INTERNATIONAL
Support Groups
There are currently three support groups: HNRNPH2 Mutations, a community for discussing patients with mutations in the HNRNPH2 gene, HNRNPH2 Parents Unite, a parent support group that is exclusive to parents of those diagnosed with HNRNPH2 genetic variation, an inviting and supportive group where you can share your experiences, challenges, and accomplishments, and HNRNPH2 Grandparents Group, a group for the Grandparents of children who have been diagnosed with rare HNRNPH2 mutations. These groups are all private. To join one of these support groups, contact us at projectybr@gmail.com.
HNRNPH2 Patient Registry
The YBRP, in partnership with Matrix and COMBINEDBrain, has created a customized health information portal for HNRNPH-Related Disorder patients and caregivers to easily capture, track and share information related to symptoms, activities, medications, and electronic health records. Patients and caregivers from around the world can enroll online and create an account in the Matrix portal. Once enrolled, you can begin taking surveys and entering information about the patient’s HNRNPH2- Related Disorder experiences. Click here for a Quick Start Guide on how to enroll.Resources for information on other conditions resulting from HNRNPH2
Autism Speaks is a non-profit organization which provides information and support to individuals on the Autism spectrum.
The Pediatric Cortical Visual Impairment Society provides information on cortical visual impairment and interventions to improve functional vision.
YOU TUBE PAGE
Check out and Subscribe to our You Tube Page for Inspiring and Educational Videos!
Check out our latest video- A Genetic Diagnosis Matters!
UK
ISRAEL
USA
Special Needs Answers
The Academy of Special Needs Planners consists of special needs planning professionals such as attorneys, financial planners, and trust officers that assist them in providing service and advice to special needs individuals and to their families.
Medicaid Waiver Programs
Each state in the USA has a medicaid waiver program for which services are needs based. These programs can assist with medical co-pays, medical equipment, and in some cases in-home assistance. Each state's program is different; for example, the program is funded through TEFRA/Katie Beckett Deeming Waiver in the state of Georgia and through OPWDD in the state of New York. To find the program available in your state, visit Medicaid's State Resource Center to find these and other programs that you may be eligible for in your state.
The Individuals with Disabilities Education Act (IDEA)
The Individuals with Disabilities Education Act (IDEA) IDEA is a law enacted in the USA in 1975, ensuring services to children with disabilities throughout the country. IDEA governs how states and public agencies provide early intervention, special education, and related services to infants, toddlers, children, and youth with disabilities who are eligible. Infants and toddlers with disabilities (birth-2) and their families receive early intervention services under IDEA Part C. Children and youth (ages 3-21) receive special education and related services under IDEA Part B.
See the list below for the website and phone number of the Early Intervention office in your state.
Alabama
Early Intervention Program
800-543-3098
https://www.rehab.alabama.gov/services/ei
Alaska
Early Intervention Infant Learning Program (ILP)
(877) 477-3659
http://dhss.alaska.gov/dsds/Pages/infantlearning/default.aspx
Arizona
Arizona Early Intervention Program (AZEIP)
(602) 635-9799 or Toll Free: (800) 237-3007
https://des.az.gov/services/disabilities/developmental-infant
Arkansas
First Connections
(501) 682-8158
(800) 643-8258 (in AR)
https://dhs.arkansas.gov/dds/firstconnectionsweb/#fc-home
California
Early Start
(800) 515-2229
https://www.dds.ca.gov/services/early-start/
Colorado
Early Intervention Colorado
888-777-4041
http://www.eicolorado.org
Connecticut
CT Birth to Three
(860) 500- 4403
(800) 505-7000
http://www.birth23.org/
Delaware
Birth to Three Early Intervention System
(800) 671-0050 (New Castle County) and (800) 752-9393 (Kent and Sussex Counties)
https://dhss.delaware.gov/dhss/dph/birthtothree/
District of Columbia
Strong Start DC Early Intervention Program
(202) 727-3665
https://osse.dc.gov/service/strong-start-dc-early-intervention-program-dc-eip
Florida
Early Steps System
(800) 218-0001
http://www.earlystepsdirectory.com
Georgia
Babies Can’t Wait
800-229-2038 or (770) 451-5484 (Atlanta)
http://dph.georgia.gov/Babies-Cant-Wait
Hawaii
Early Intervention Section
(808) 594-0066 (for Oahu) or 1-800-235-5477 (for Neighbor Islands)
http://health.hawaii.gov/eis/
Idaho
Idaho Infant Toddler Program
(208) 334-5590 or (208) 334-6530
https://healthandwelfare.idaho.gov/Children/InfantToddlerProgram/tabid/4120/Default.aspx
Illinois
Early Intervention
(800) 447-6404 or (800) 323-4769
http://www.dhs.state.il.us/page.aspx?item=30321
Indiana
First Steps
(800) 545-7763
http://www.in.gov/fssa/ddrs/2814.htm
Iowa
Early ACCESS
(888) 425-4371
http://www.iafamilysupportnetwork.org/early-access-iowa/what-is-ea
Kansas
Kansas Infant-Toddler Services
(785) 296-6135 or (800) 332-6262
http://www.ksits.org
Kentucky
First Steps
(800) 442-0087
https://www.chfs.ky.gov/agencies/dph/dmch/ecdb/Pages/keis.aspx
Louisiana
Early Steps
(866) 327-5978 or (225) 342-0095
http://new.dhh.louisiana.gov/index.cfm/page/215
Maine
Child Development Services (CDS)
(877) 770-8883
https://www.maine.gov/doe/learning/cds
Maryland
Maryland Infants and Toddlers Program
(800) 535-0182
http://marylandpublicschools.org/programs/Pages/Special-Education/MITP/index.aspx
Massachusetts
Early Intervention Division
(800) 905-8437 or (617) 624-6060
https://www.mass.gov/orgs/early-intervention-division
http://eiplp.org/
Michigan
Early On Michigan
(800) 327-5966
http://www.michigan.gov/mde/0,4615,7-140-63533_71666-127141--,00.html
Minnesota
Help Me Grow Minnesota
(866) 693-4769
http://helpmegrowmn.org/HMG/index.htm
http://education.state.mn.us/MDE/fam/ecse/
Mississippi
First Steps Early Intervention Program
(800) 451-3903 (in MS) or (601) 576-7427 (Jackson area)
http://www.msdh.state.ms.us/msdhsite/index.cfm/41,0,74,html
Missouri
First Steps
(866) 583-2392
http://dese.mo.gov/special-education/first-steps
Montana
Montana Milestones Early Intervention Program
(406) 444-5647 https://dphhs.mt.gov/ecfsd/ChildCare/montanamilestones/index
Nebraska
Early Development Network
http://edn.ne.gov/cms/
(888) 806-6287
Nevada
Nevada Early Intervention Services (NEIS)
(800) 522-0066
http://dhhs.nv.gov/Programs/IDEA/Early_Intervention_Programs/
New Hampshire
Family Centered Early Supports and Services
(800) 298-4321 or (800) 852-3345, ext. 5034
https://www.dhhs.nh.gov/programs-services/disability-care/developmental-services/family-centered-early-supports-services
New Jersey
Early Intervention System
(888) 653-4463 or (800) 322-8174 (Childfind Birth-21)
https://nj.gov/health/fhs/eis/for-families/
New Mexico
Family Infant Toddler Program (FIT)
(800) 832-1321
https://www.nmececd.org/fit-families/
New York
Early Intervention Program
(800) 522-5006 ("Growing Up Healthy" 24-Hour Hotline) or (800) 577-2229 (in NYC)
http://www.health.ny.gov/community/infants_children/early_intervention/
North Carolina
Infant Toddler Program (ITP)
(919) 707-5520
https://beearly.nc.gov/index.php/
North Dakota
Early Intervention
(800) 755-8529 or (701) 328-8968
http://www.nd.gov/dhs/services/disabilities/earlyintervention/
Northern Mariana Islands
Children's Developmental Assistance Center Early Intervention Services (EIS)
(670) 237-3061
https://www.cnmipss.org/early-intervention-program
Ohio
Early Intervention
(800) 755-4769 (GROW)
http://ohioearlyintervention.org/
Oklahoma
SoonerStart
(405) 521-4880
http://ok.gov/sde/soonerstart
Oregon
Early intervention/Early Childhood Special Education
(503) 947-5747 or (503) 947-5728
https://www.oregon.gov/ode/students-and-family/SpecialEducation/earlyintervention/Pages/default.aspx
Pennsylvania
Early Intervention Services
(800) 692-7288
https://www.chop.edu/health-resources/early-intervention-agency-pennsylvania
Rhode Island
Early Intervention Program
(401) 462-3425
Website: http://www.eohhs.ri.gov/Consumer/FamilieswithChildren/EarlyIntervention.aspx
South Carolina
Baby Net
Phone: 803-898-4439
https://msp.scdhhs.gov/babynet/site-page/refer-child-babynet
South Dakota
South Dakota Birth to Three
(800) 305-3064
https://doe.sd.gov/birthto3/
Tennessee
Tennessee Early Intervention System (TEIS)
(800) 852-7157
https://www.tn.gov/education/early-learning/tennessee-early-intervention-system-teis.html
Texas
Early Childhood Intervention (ECI) Services
(877) 787-8999 (select option 3)
https://hhs.texas.gov/services/disability/early-childhood-intervention-services
Utah
Baby Watch Early Intervention Program
(800) 961-4226
http://utahbabywatch.org/
Vermont
Children's Integrated Services – Early Intervention
Phone: (802) 769-6174
https://dcf.vermont.gov/services/cis
Virginia
Early Intervention Services
(800) 234-1448
http://www.itcva.online
http://dbhds.virginia.gov/developmental-services/early-intervention-for-infants-and-toddlers
Washington
Early Support for Infants and Toddlers (ESIT)
(800) 322-2588
https://www.dcyf.wa.gov/services/child-development-supports/esit
West Virginia
WV Birth to Three
(866) 321-4728 (in WV only)
http://www.wvdhhr.org/birth23/referral.asp
Wisconsin
Birth to 3 Program
https://www.dhs.wisconsin.gov/birthto3/index.htm
https://www.dhs.wisconsin.gov/birthto3/contacts/countycontacts.htm
Wyoming
Infant Toddler Program
Phone: (307) 777-5246 or 1-877-996-4769
https://health.wyo.gov/behavioralhealth/early-intervention-education-program-eiep/