Resources
Disclaimer: The following resources are provided for informational purposes only. While the Foundation has identified these links to other web sites and medical publications as a service, the Intracranial Hypertension Research Foundation (IHRF) is not responsible for the content or any information obtained through these off-site links and publications. Medical and legal information found on the Internet should not be a substitute for the advice of your physician or your legal advisor.
General Information
American Academy of Neurology (AAN)
http://www.aan.com
The website of the American Academy of Neurology.
American Academy of Ophthalmology (AAO)
https://secure.aao.org/aao/find-an-eye-md
Offers search for board-certified ophthalmologists in the U.S. and abroad.
American Association of Neurological Surgeons (AANS)
http://www.aans.org/Find%20a%20Board%20Certified%20Neurosurgeon/Search.aspx
Offers search for board-certified neurosurgeons in the U.S. and abroad.
American College of Radiology (ACR) /Radiological Society of North America (RSNA)
RadiologyInfo.org
http://www.radiologyinfo.org/index.cfm?bhcp=1
Offers information and tips on diagnostic imaging procedures including angiography, computer tomography (CT scans), magnetic resonance imaging (MRI), x-ray and ultrasound. Also provides database of ACR-accredited medical imaging providers.
American Medical Association (AMA)
https://apps.ama-assn.org/doctorfinder/recaptcha.jsp
Offers search for licensed physicians in the U.S.
American Society of Hematology
http://www.hematology.org/Patients/
Offers information on blood disorders, current research and a search for board-certified hematologists in the U.S.
American Society for Metabolic and Bariatric Surgery (ASMBS)
http://www.asmbs.org/
Offers search for board-certified bariatric surgeons in the U.S.
Center for Disease Control and Prevention: Blood Clotting Disorders
http://www.cdc.gov/ncbddd/hbd/clotting.htm
Information on thrombophilia and hereditary blood clotting disorders, including medical articles.
Cerebrospinal Fluid Research homepage
http://www.cerebrospinalfluidresearch.com
Open-access medical journal focusing on current cerebrospinal fluid research.
MedlinePlus
http://www.nlm.nih.gov/medlineplus/
MedlinePlus offers information on specific conditions, current news and other resources.
Medline Plus: Weight Control
http://www.nlm.nih.gov/medlineplus/weightcontrol.html
Weight control resources from the National Institutes of Health.
National Institute of Neurological Disorders and Stroke (NINDS)
http://www.ninds.nih.gov
Information and current news about neurological diseases.
National Organization for Rare Diseases (NORD)
http://www.rarediseases.org
Fact pages on specific rare diseases, as well as information on patient assistance programs.
Neurology homepage
http://neurology.org/
Offers a keyword search of articles from the journal Neurology, with full-text links and a “Patient Pages” section.
North American Neuro-Ophthalmology Society (NANOS)
http://www.nanosweb.org/i4a/member_directory/feSearchForm.cfm?directory_id=1&pageid=3390&showTitle=1&showDebugOutput=false&widgetPreview=0&page_version=
Offers search for board-certified neurologists and ophthalmologists with a sub-specialty in neuro-ophthalmology in the U.S. and abroad.
Pharmaceutical Research and Manufacturers of America
http://www.phrma.org
1-800-762-4636
Information and news from the pharmaceutical industry, including topics such as how clinical trials are run.
Pubmed
http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed
The Pubmed database allows searches of medical literature citations and abstracts from medical journals.
The University of Michigan Medical School Anatomy Atlas
http://anatomy.med.umich.edu/atlas/atlas_index.html.
Actual anatomical pictures of the brain, ventricular system, blood supply, spine and eye.
Caregiving and Support
The IH Brain Pain Team
http://ihbrainpain.org/index.html
A support and resource site specifically for IH patients and families, run by IH patients and families.
American with Disabilities Act
http://www.usdoj.gov/crt/ada/adahom1.htm
Information on and assistance with the Americans with Disabilities Act.
Centers for Medicare and Medicaid Services
www.medicare.gov/publications/home.asp
1-800-633-4227
Offers keyword-search for free publications like, “Medicare Basics: A Guide for Caregivers” that addresses Medicare coverage for home health and prescription drugs.
Family Medical Leave Act
http://www.dol.gov/whd/fmla/
1-866-4USWAGE (1-866-487-9243)
Information on the Family Medical Leave Act, which requires employers with 50 or more employees to offer up to 12-weeks of unpaid leave to eligible employees in order to care for a seriously ill family member (spouse, child or parent).
National Alliance For Caregiving
www.caregiving.org
Organization with links to other caregiver organizations and resources for caregivers and professionals.
Strength for Caring
www.strengthforcaring.com
Information, support and message boards for caregivers. Includes articles on a variety of topics such as coping and family issues.
Caitlin’s Wish
http://www.caitlinswish.co.uk
Caitlin’s Wish is a fairytale for children that addresses the question of what happens when a parent develops a chronic illness and the child becomes a caregiver. Victoria Taylor, the book’s author, based Caitlin’s Wish, on her family’s experience after her husband, Rob, was diagnosed with IH.
Finding General Help in Your Community
211.org
http://211.org/
A national non-profit organization that runs a helpline (2-1-1), which connects you to organizations and agencies within your local community. 211.org chapters are located in most but not all 50 states, Puerto Rico and Canada. In Canada, please contact http://www.211canada.ca/
Medical Care
If you are uninsured and need assistance with medical bills, contact your local Social Security Office at 1-800-772-1213 to determine if you qualify for Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI). While Social Security Disability is determined by prior work experience, SSI is based on financial need.
The U.S. Department of Health and Human Services: The Affordable Care Act (ACA)
http://www.hhs.gov/healthcare/rights/
Information about the Affordable Care Act (ACA), a patient’s rights under the ACA, and links to the insurance marketplace.
The U.S. Department of Health and Human Services’ Health Resources and Services Division
http://www.hrsa.gov/gethealthcare/affordable/index.html
1-888-275-4772
Information on healthcare and public programs for the uninsured, including a search for local health centers and clinics.
Foundation For Health Coverage Education
http://coverageforall.org/
A national non-profit whose mission is to simplify both public and private health insurance eligibility information to help more people access insurance coverage. Website includes state-by-state tools and resources, info on children’s health insurance programs and more.
Hill-Burton Facilities
http://www.hrsa.gov/gethealthcare/affordable/hillburton/facilities.html
1-800-638-0742
The U.S. government provides low-cost or no-cost medical care to those who qualify through Hill-Burton facilities. You can receive a list of hospitals and clinics participating in this program by contacting Hill-Burton directly.
Prescription Assistance
The U.S.Department of Health and Human Services: Healthfinder.gov/ Patient Prescription Assistance Resources
http://www.healthfinder.gov/rxdrug/
Detailed information and lists of patient assistance programs (PAPs), offered through membership associations, non-profit organizations and for-profit businesses.
Healthwell Foundation
http://www.healthwellfoundation.org/
1-800-675-8416
A non-profit organization that offers financial assistance to patients living with chronic and life-altering illnesses to help pay their share of prescription drug copayments, deductibles, and health insurance premiums.
The Partnership for Prescription Assistance
www.pparx.org
1-888-477-2669
The PPA provides a single point of access to more than 475 public and private patient assistance programs that could offer help on more than 2,500 prescription medicines, including a wide range of generics.
RxAssist
www.rxassist.org/default.cfm
Non-profit program that offers information and database of pharmaceutical companies’ drug assistance programs and drugs available. Please note: Diamox Sequels and generic acetazolamide tablets are not currently available. Also offers table of state-based prescription programs. http://www.rxassist.org/patients/res-state-programs.cfm
The Medicare Rights Center
www.medicarerights.org
1-212-869-3850
Another source for locating prescription assistance or discount programs.
NeedyMeds
http://www.needymeds.com/
Offers information on state-based prescription assistance programs and government-funded programs.
Together Rx Access Program
www.TogetherRxAccess.com
1-800-444-4106
Offers a free prescription-savings card for residents of the United States and Puerto Rico who have no prescription drug coverage and are not eligible for Medicare. Cardholders may save as much as 40% on brand-name prescription medicines, though restrictions apply. Some generic medications may also be included in the card program.