Finding Treatment Information

Finding Treatment Information

Hi, I’m an Information
Specialist for the Genetic and Rare Diseases Information
Center (also known as GARD). In this video, I’ll share some
of our go-to, trusted resources that can help you
find information about treatment for rare diseases. GARD is a service for the public
that is funded by two parts of the National Institutes of
Health or NIH: the National Center for Advancing
Translational Sciences or NCATS and the National Human Genome
Research Institute or NHGRI. You can start by searching for a
specific disease that you want to learn more about in
the Diseases section of the NCATS/GARD website. I’ll be using Lynch
syndrome as an example. Check for a “Treatment”
section on the disease page. Here we list management
guidelines, links to clinical trials, and
approved medical products. The medical products listed
on our site are medicines for rare diseases that have
been approved by the U.S. Food and Drug
Administration or FDA. In the table you can find
information about the medicines, links to information about the
company that makes them, and information written
for patients. GeneReviews has information
about medical care for many inherited diseases. The articles found on their site
include topics such as exams you might need after being
diagnosed, medicines and other treatments, and screening
tests that look for other medical problems that
could develop in the future. GeneReview articles are written
by professionals who are experts in the condition. If you want to find out if
there’s a clinical study testing new or existing
treatments, we suggest you visit the NIH website Once you find a study, read the
summary that describes what happens in the study and
who is eligible to take part. Choosing to be
part of a study is an important personal decision. Talk with your healthcare
provider and family members or friends about
deciding to join a study. To learn more, you may contact
the study research staff using the contact information that is
provided in the “Contacts and Locations” section at the
bottom of each study page. If you’re interested in
treatment-related research at the NIH in Bethesda, Maryland,
you can get help finding trials by calling the NIH Patient
Recruitment and Public Liaison Office toll-free at
1-800-411-1222. When searching for treatment
information, we encourage you to also visit
our section called “Your Questions Answered.” Here we post our
answers to questions we have received
from the public. You may find that we’ve already
answered a similar question to the one you have. If you’re looking for a basic
overview of the treatment options available for a disease,
support organizations are a great source for
this information. Check the “Organizations”
section of the GARD disease pages to see if an organization
for your condition is listed. These groups may also provide
professional guidelines for medical care, and list
medical centers with expertise in your rare disease. Also check out our
Overview section. Here we list additional
information sources that often have information on treatment. In particular, “Medscape
Reference” articles are a good source for detailed
information about treatment. These articles are written for
healthcare professionals. After accessing the article,
you can click on the tabs for “Treatment” and “Medication.”
This resource also often has a section on prognosis,
so that you can learn what to expect in the future. You may need to register to view
the Medscape Reference articles, but registration is free. There’s a lot of
information out there, and it can feel overwhelming. However, we hope that these tips
will help you find information about available treatment
for your condition. We suggest that you discuss
the information you find with your healthcare provider
and talk about which options are right for you. In addition, people also find it
helpful to talk with other patients who have
gone through treatment. Many advocacy organizations
have patient forums or can match you with other
patients where you can discuss the condition
with others online. If you still have a hard time
finding treatment information, please contact a GARD
Information Specialist.


  • Florencia Braga Menéndez says:

    Excellent! We need this video in different languages! Thank you so much!

  • Stardust says:

    I would like for you to redo this video and make Morgellons the topic since so many people are treated horrifically and labeled delusional. They cite low income..whoa, that's not me, unsanitary condition, whoa , not me again, and OH! the BIg One….may use drugs like cocaine…oh yeah doesn't apply to me at all. How many more are going to become infected while being treated like lepers. There are no clinical trials. There is NO information out there unless it is from the public. The last time I contacted you, you offered nothing..just the usual run around. The CDC, FDA, NIH, Hilarry, Diane F., and O'Bama all know about Morgellons. Tragic.

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