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  • Gabby C
    My hope is that we find treatments that help improve the quality of life for those affected most by HHT. My mother and brother suffer from chronic nose bleeds, and I wish nothing more than for more advanced at home treatments and remedies to slow/stop the bleeding or helps them revive faster as I see what anemia, lack of oxygen, and iron does to their stamina and strength to...
  • reza
    My hope is HHT awarness increases in the medical community and as well as patients and Insurance Companies. HHT has symptems and also costs. when you want to treat your lung AVMs or brain infection you need money and most of Insurance commpanies dont include inherated diseases. I hope more HHT awareness helps HHT patients to deal with the disease...
  • Diane
    My hope is that I will be able to live my life without the constant nuances of nosebleeds and iron infusions.
  • Julia C
    My hope is that my children don't have to receive that very familiar puzzled look I see so often when I am in the emergency room bleeding out profusely with a nosebleed. That they don't have to hear that ever present question "you have what"?? My father endured the worst medical treatments as a result of this lack of HHT awareness by the medical community....
  • Aodhán Q
    My hope is that what I have will not remain hidden - and that I will be a help in sharing the news about HHT. Yours, Aodhán Quinlan, Cork, Ireland
  • Sue C
    My hope is for more Education and Awareness, including the Medical Profession. I grew up with complications from HHT but was not diagnosed until my 30's. My hope is for no more deaths caused from HHT and that my children's complications with HHT in their lives will be minimal. Some days I just wish I didn't have to worry about bloody noses, low iron or pavms.
  • JoAnn
    My hope is That my kids and grandkids get treatment immediately. Not years after the symptoms show.
  • Renate K
    My hope is that the health system around the world would be easier as in Norway. I have severeal visits to the hospital during one year and get all the help I need, free travels to the HHT expert and medicines to make my daily life better. I never have to choose between health or roof over my head, coz the system with taxes pays it forward, even though...
  • Kelly J
    My hope is medical professional will no longer ignore my disorder and it's potential impact on my other health issues and the impact of treatments on my HHT side effects. I always have to explain that I can not take anti inflammatory medical and Adil is not a solution to everything.
  • Susan R
    My hope is that we find the 90% of the as-of-yet undiagnosed HHT individuals and families so that they can get information about HHT, enjoy prophylactic lifestyle and medical changes to prevent adverse events, and have access to HHT Centers of Excellence for routine medical help as well as catastrophic intervention.
  • DON H
    My hope is that no less than a cure that future children born from parent(s) with HHT will be born free from HHT. Prayers that a miracle cure could be found for current sufferers from this disease.
  • Jason
    My hope is that one day the genes will be fully identified and a tablet, spray or injection will be able to fix the damage perminantly so we don't have to suffer this affliction anymore.
  • Anne
    My hope is -a cure treating the AV-Shunts and telangiectasia (perhaps genetic therapy on somatic cells) - a better understanding what it means to live with HHT by doctors, relatives and friends: in my case 90 Ec per year, Hb of 8.4 g/dl, no more social contacts because always tired and possibility of bleeding, without physical and mental force= power, nearly no sex because tired, partner...
  • Peter A
    In the beginning, 1994, when I was sent home to die from massive nosebleeds that couldn't be controlled, I was then told of an HHT Center in New Haven, Connecticut headed by Dr. Robert I. White. He made my fears of helplessness and dying subside. I made a phone call to Dr. White one day, he told me to fly up the next day from Texas and he would...
  • Katey
    My hope is to find a cure! Watching what this horrific disease has unexpectedly done to my fiancé, makes me want to raise awareness, sharing our story, so no one else will go undiagnosed.
  • Yannis V
    My hope is to engage a lot of scientists around the world in the battle to understand and ultimately fight this disease.
  • Brenda M
    My hope is that more doctors are made aware of HHT. They have "heard" of AVM's but do not associate them with HHT. Be sure to tell ALL your doctors about this disease. Give them printed information to study.
  • Alice
    My hope is that genetic testing will become more accessible and affordable in terms of cost and insurance coverage so that all members of an affected family can know where they stand in relation to having children.
  • Diane A
    My hope is. A greater number oh Docs KNOW anything about HHT... I have had to educated all my Family Practice Doc's..even my most recent Dermatologist !! My husband was well informed because he was A Head And Neck. surgeon...and he had 47 Years of practice with me..One time he was the only one who could stop an Oral bleed ....Understanding they have SO much to learn...
  • Francine V
    My hope is that General Practitioners, ER physicians and nurses (including school nurses) are educated in HHT and symptoms of recurrent nosebleeds and that a simple blood test be developed for HHT. I had nosebleeds since the age of 7 or 8, as did my brother and father. My brother died at age 50 of a cerebral AVM bleed. Being a medical professional I diagnosed myself...
  • Jody M
    My hope is that soon there will be no reason for people to be misdiagnosed or not diagnosed and the very best treatments will be available to all who need them.
  • Mary I
    My hope is for HHT to be included in a greater capacity in health careers curriculum of medicine, nursing and dentistry. I would also hope to see HHT included in accredited "continuing education" courses. Perhaps we need an afflicted celebrity to bring greater awareness.
  • Susan R
    My hope is that we find the 90% of the as-of-yet undiagnosed HHT individuals and families so that they can get information about HHT, enjoy prophylactic lifestyle and medical changes to prevent adverse events, and have access to HHT Centers of Excellence for routine medical help as well as catastrophic intervention.
  • john b
    My hope is that my 5 children do not become trans fusion dependent as I have at age 65. They have already been diagnosed and are suffering some of the symptoms. They have given me 8 beautiful grandchildren and I want them to live a life where HHT has been cured!!!
  • Debbie
    My hope is that doctors will learn more about HHT and not just assume you don't have a real problem.
  • Brenda B
    My hope is that all doctors have a knowledge of HHT. Jeff was ten years+ before he was diagnose. Sometimes its hard to get into an HHT Center and we have to wait on appointments. They are set up as clinics . I know Jeff had his nose cauterize because we could not get an appointment for three months with the centers ENT. Second...
  • Ben W
    My hope is professional care-givers are more broadly educated to recognize HHT. It is the family/GP who sees the broader portion of the population.
  • Veronica H
    I pray a cure is found! This is an extremely sad and quiet disorder and so many are suffering known and un aware! My family has a history or HHT and my mother passed away from complications at the age of 54 and it took me over a year to convince my daughter (now age 5) doctor to do a genetics test even though she suffered many many episodes...
  • Shawn R
    My hope is that someday people with HHT can have children with zero risk of carrying HHT. I hope someday in my lifetime I will stop having daily nose bleeds.
  • Ferguson
    My hope is to bring improved evidence based therapy to treatment of epistaxis in HHT patients
  • Erika
    My hope is that we come together, to fight together, to save future generations the pain we endure of this invisible disease.
  • David R
    My hope is when my children are ready to have their own children (they are 16 and 14 today), they will both be able to be confident that HHT will not be a factor in their children's' lives.
  • Shona
    My hope is for doctors to be more educated about recognising signs of HHT and bringing awareness to all. Only through education can we diagnose earlier and improve treatment.
  • Christie M
    My hope is that one day people with HHT will not be treated as though they are uneducated by medical staff, and so I don't have to provide that education to medical professionals. My hope is that my husband can live a long, healthy life with me and our family. My hope is my teenage daughter never faces the same health issues as a result of...
  • farra t
    My hope is a day when all people who have HHT know it and can be treated for it.
  • KR
    My hope is that all may be diagnosed correctly. My misdiagnoses was different. I was told I had HHT when I did not. All my hope was lost of ever having children of my own. Yes, that was my choice, but it was based on the belief that I had HHT. I did not want to take the 50% chance of passing the genetic blood vessel disorder that I...
  • Debbie S
    My hope is that more HHT educated physicians would practice somewhere other than at HHT clinics . Making it more access for people with HHT. Would also like to see training seminars offered other physicians in their cities.
  • Georges C
    My hope is that every teaching hospital gets a presentation to the doctors in training to look for hht signs and symptoms. Also every telemetry units where most of the patients might have hht and are being misdiagnosed.
  • Lois J
    My hope is first..more doctors become aware of HHT AND people who have the warning signs TAKE the tests available to see if they should have the condition...AND make the genetic testing easier and more affordable AND possibly have more insurance companies cover that testing. Much more education and awareness for both doctors and all folks! My husband passed away last year at the age of 83 ....
  • Angela B
    My hope is to see a generation of happy and healthy "HHT free" children in my family (and in other HHT families). I hope for vacations instead of hospital stays. I hope for a day when all medical professionals have a clear understanding about what HHT is and can do and they have treatments and ultimately find a cure.
  • Susan O
    My hope is that all doctors will get educated about this disease, its symptoms, and have the dedication to peel the layers to treat the HHT patient in their complex entirety. Example: possible side effects of many medications are internal vessel bleeding. I have had to intervene often to halt the prescribing of those meds only because the primary physician did not entertain the consequences, despite being aware...
  • Lois J
    My hope is first..more doctors become aware of HHT AND people who have the warning signs TAKE the tests available to see if they should have the condition...AND make the genetic testing easier and more affordable AND possibly have more insurance companies cover that testing. Much more education and awareness for both doctors and all folks!
  • Carol C
    My hope is that they can figure out a way to stop the missing gene from being missing before birth. I was recently diagnosed with the disease a few years ago at age 54 and have gotten worse as I got older. My mother and grandmother carried the disease. I had so many health problems that my family doctor sent me to a blood/cancer hematologist to see if...
  • Kim J
    My hope is that dentists and doctors all over the world will be able to recognize early warning signs of the disease, such as red spots on the tongue, fingers and face.
  • C.J. G
    My hope is that more people become aware of HHT, so that they can : 1. learn if they have it themselves, 2,gain knowledge of how to help those of us who have it, 3. know how important it is to find a cure. I believe HHT is also exacerbated by environmental pollution--nosebleeds are on the increase here in New York where I live. Also think that doctors...
  • Herb R
    My hope is as I have found an ENT who uses vascular sclerosing agent that can help the epistaxis comonent of theis disease.
  • tim
    My hope is cure
  • Marta
    My hope is early and accurate diagnosis
  • Christine
    My hope is a cure
  • Farra T
    My hope is a great new day without HTT
  • Victoria
    My hope is that one day hht will be curable !!!
  • Stacey D
    My hope is my best friend can live a long and healthy life with more specialists who can help her do just that.
  • Janice
    My hope is to see my siblings and myself, my nephew and my children be able to live past their 6th decade with HHT. #cureHHT
  • Patricia R
    My hope is: That each and every doctor coming out of medical school has not only heard of HHT, but is also very aware of the symptoms, so they can diagnose it quicker and more efficiently. Awareness Saves Lives!
  • Elyna I
    My hope is to have more funds to research a more effective, less medical invasiment treatment in children with HHT so they don't have to suffer.
  • Melissa W
    My wish is that a cure for this disease be found in my lifetime. So that my children and grandchildren will not have to suffer as my Father has.
  • Robin C
    My hope is my youngest daughter gets a diagnosis and if she has HHT they will find the right gene!
  • Clare F
    My hope is that more people get diagnosed and treated sooner
  • Lynne A
    My hope is for more awareness of the condition in the UK. The health authorities do not know enough about HHT. My doctor has told me to take aspirin on several occasions, anyone who suffers from this condition knows that anything that thins the blood is not a good idea. My wish is for the NHS to do more research
  • Robert B
    My hope is to find a cure for this or something to treat it with out surgery! My grandmother had the g I and past away from it and my mother had the avm witch burst and gave her a stroke and 2days later she past away also I have the nose bleed the same with my two siblings and one sibling dose not have it I'm in...