Resources
More organizations
Nineteen places that do something we do not, grouped by what you might need.
None of these are ours. They are here because they do something Lone Star does not — national advocacy, medical IDs, scholarships, an app for logging infusions — and because somebody here has found them useful.
Where something costs money, it says so. Where a link is really meant for clinicians or researchers, it says that too: a few of these turn up in search results looking like patient assistance, and they are not.
Addresses change. Six of the nineteen on the old version of this page had gone stale. If one of these stops working, tell us and we will fix it.
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The national organizations
Two of these cover the whole country, and most of what anyone links to starts at one of them. The third sends help to countries that have none.
The guidelines your treatment center works from, the scholarship directory, Steps for Living, and the national advocacy. Formerly the National Hemophilia Foundation — the old hemophilia.org address still forwards, but this is the real one now.
Hemophilia Federation of AmericaHFAThe other national organization. Policy and insurance reporting, the Dear Addy advice column, and its own programs — currently the one with no presence anywhere else on this site.
Save One LifeSPONSORSHIP · $35/MONTHDirect financial support for people with bleeding disorders in countries with no programs of their own — India, Nepal, Romania, the Philippines, Tanzania. Sponsoring someone is $35 a month. Founded in 2001 by Laureen Kelley, whose company publishes the books and the newsletter further down this page.
And one that is history now
The Committee of Ten Thousand was founded in 1989 by and for people with hemophilia who contracted HIV and hepatitis C from contaminated clotting factor. It pushed for settlements, for federal compensation, and for blood-safety reform, on the conviction that the government, the industry and the existing advocacy had all failed to prevent what happened.
Its website is still online, but nothing on it is newer than about 2015. In 2023 COTT gave roughly a hundred cartons of its records to the UCSF archive. They are not processed yet and there is no finding aid, so the link below is a page about the collection rather than the collection itself.
Half the community
Women and girls
Women were left out of this for a long time and the resources are younger than the rest. These three are the useful ones.
NBDF's program for women and girls. Stories, artwork and video from the community, and expert answers on periods, pain and the rare factor deficiencies. If you have just been diagnosed, the peer stories are what people come back for.
Better You KnowNBDFNBDF's awareness site. Not a diagnosis tool — what it gives you is the material to take to a doctor: visit guides, a health diary, a lab test log, and a brochure written for teenage girls.
Foundation for Women and Girls with Blood DisordersFWGBDMostly written for clinicians — webinars, curricula, fellowships. The parts worth a family's time are the patient resources, the Period Talk toolkit and the clinic directory.
On you, and on your phone
Carrying it with you
Two of these you wear. The other two keep track of things for you — what you have infused and when, and whether a product you use has been recalled.
A membership, not just a bracelet: a 24/7 response line and a health record an emergency department can be read from. From $35 a year, with the jewellery bought separately. There is a means-tested sponsorship for a free ID and a year's membership, reapplied for each year.
American Medical IDSHOPA shop rather than a service — engraved bracelets and necklaces for adults and children, bought once, nothing to renew. No bleeding disorders discount is advertised.
MicroHealthAPP · FREEA free app for logging infusions and bleeds, with reminders for prophylaxis and a way to share what you have logged with your treatment center. iPhone, iPad and Android.
Patient Notification SystemFREE · PPTAFree alerts — email, text or phone — when a plasma-derived therapy is withdrawn or recalled. Run by the plasma manufacturers' association; you register directly with them.
The money part
Paying for it, and getting through the system
We have our own page on help with costs. These three reach further than we can: copays and premiums, scholarships from outside sponsors, and the Texas programs.
Copays, insurance premiums, travel and other medical costs. Their funds open, waitlist and close as money moves, so check the portal or call 1-800-366-7741 rather than assuming anything is open today.
ScholarshipsNBDF · DIRECTORYNBDF keeps a directory of about eleven scholarships from outside sponsors — not NBDF's own awards. Several are open to family members as well as the person diagnosed, which is easy to miss.
Navigate Life TexasTEXAS HHS · EN/ESTexas Health and Human Services' own site for families of children with disabilities or special health care needs: Medicaid, CHIP, SSI, medical transportation and the waiver programs. Fully available in Spanish.
When you want to read
Reading and learning
None of this is urgent. It is here for the evening you decide to sit down and understand the whole thing properly.
NBDF's education site, organized by age: birth to 8, 9 to 15, 16 to 25, and adults. School, camp, puberty, independence, insurance, work — the things that come up at each stage rather than all at once.
PEN, from LA Kelley CommunicationsNEWSLETTER · FREEThe Parent Empowerment Newsletter — quarterly, free, and written and edited by the parent of a son with hemophilia. The site calls it the oldest hemophilia newsletter in the country.
Books, from LA Kelley CommunicationsFREE TO FAMILIES · PAY SHIPPING“Raising a Child With Hemophilia” and “A Guide to Living with von Willebrand Disease” are free to families and patients — you pay only shipping. “Teach Your Child About Hemophilia” is a free PDF. The rest run $5.99 to $12.99. Same publisher as PEN, and the same person who founded Save One Life at the top of this page.
World Federation of HemophiliaWFHThe international body. Their treatment guidelines, a shared decision-making tool, plain-language pages on von Willebrand disease and the rare deficiencies, and a free eLearning platform.
Not for families
For clinicians and researchers
These three are written for doctors, nurses and researchers rather than for families. They are on the page so you know what they are if you land on one.
The recommendations your treatment center works from, published by NBDF's medical and scientific advisory council. Public, and technical.
FDA — blood and blood productsFDA · CBERThe regulator. Written for industry, but the recalls listing and the shortages page are the parts a family might genuinely want: whether a specific product has been pulled or is in short supply.
NBDF research grantsNBDF · RESEARCHERSFunding for researchers applying to study bleeding disorders — fellowships and career development awards. It is not patient assistance, despite how it reads in a search result.
Where to next
Where to next
None of the organizations on this page pay to be here.