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VHL Alliance

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Nonprofit Overview

Causes: Cancer, Family Services, Health, Health Care, Human Services

Mission: To improve diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau and related tumor conditions.

Results: We serve more than 8000 people in the United States, and over ten thousand more outside the United States, through a network of volunteers and clinical care centers in 26 countries.  We publish materials in 12 languages, and have online support groups in five languages.

Target demographics: Any person affected with VHL or any of the kinds of tumors that occur in VHL, their families, friends, and healthcare professionals.

Direct beneficiaries per year: more than 18,000 in 108 countries

Geographic areas served: national and international

Programs: Toll-free telephone support hotline, online discussion groups in five languages, Quarterly newsletter, national and regional meetings, networking for physicians, clinical care centers, funding for research.  The VHL Handbook revision 4 published in 2013.

Community Stories

88 Stories from Volunteers, Donors & Supporters

kminer

Volunteer

Rating: 5

The VHL Family Alliance supports families and individuals with von Hippel Lindau disease world wide. I can't imagine living with this disease without them.

Previous Stories
7

Volunteer

Rating: 5

Joyce Graff and the vhl Family Alliance helped save my brother's life last year. Thank you! Thank you! Thank you!

3

General Member of the Public

Rating: 3

I was diagnosed wen I was 18 after 6 long years not knowing what was wrong. Im the only one in my family with the defective gene so realy looking for others like me because you know how it affects every day life. Xx

Client Served

Rating: 5

I'm a family member of a VHL Warrior. We found VHLA earlier this year when going through another surgery. What a relief! First, the resources available (especially the handbook) have been invaluable! In addition to improving our own knowledge, we've been able to educate doctors in our area thanks to VHLA. Second, the have a connection to a community of caring, kind, knowledgeable, and driven people is extremely comforting. Each person I've had interaction with from VHLA has responded promptly and with genuine care of my personal interest. I feel grateful we have them! If you have to have VHL (or have a family member with VHL), at least you get VHL Alliance too!

Client Served

Rating: 5

I was diagnosed with VHL in 1993 and became of the VHLFA shortly thereafter. The VHLFA has been the hub for patient education on the symptoms and monitoring of VHL and the backbone into research and establishing Clinical Care Center. The VHLFA is not only an organization but also a "community" where people can feel like they are not alone in the fight against VHL.

Cathy31

Volunteer

Rating: 5

I was diagnosed 19 years ago with VHL and was really lost.. I found the family alliance and found lots of incredible info and so many answers. The VHLFA saved my life. They helped me find the right doctors and have always been there sometimes just to listen.

Previous Stories

Client Served

Rating: 5

The VHLFA saved my life. 18 years ago, I was diagnosed with VHL and had no idea what to do next. I called their hotline and was directed to the NIH. The family alliances news letter and website keep me updated on the disease and connected to others with VHL. Joyce the founder is an incredible person who has saved so many of us VHLers both physically and emotionally.

Volunteer

Rating: 5

we are not left alone, this is the most important of all. we are thankful to VHLFA ALLIANCE.

Client Served

Rating: 5

My family and I are so grateful for the VHL Alliance. Through resources and forums we get much needed information to our physicians.

Ali B.

Volunteer

Rating: 5

Thanks to this charity i have found out so much more about VHL..My son suffers from it and if it wasnt for this wonderful charity and the people who run it i dread to think where we would be...They are always there to answer questions and offer support . Thanks so much for everything we really appreciate it..

Volunteer

Rating: 4

Mi esposo fue diasnosticado con VHL este ano en Septiembre 2012 y no ha sido nada facil porque el nunca ha sido un hombre de enfermedad. Suponemos que tiene VHL por su madre que murio ya hace 12 y tenia un cyst en el cerebro. Tambien En el mes De Octubre me dijeron que mi hijo mas grande Tambien tenia el disease. Desde que todo esto comenzo me siento dichosa de saber que existe este web donde puedo encontrar mas persona con respuestas a este disease me siento mejor y con mas apoyo. Tambien he aprendido que Dios es muy pero muy grande y que nunca nos desampara. Ahora voy a comenzar a hablar con doctores en mi pais dominican republic acerca de este disease. Si alguien esta interesado en ayudarme con informacion para la republica dominca por favor mandar un email at delacruz1504@gmail.com. Gracias familia

Volunteer

Rating: 0

I am vice president of VHL France. We all appreciate the role taken by VHL Family Alliance in supporting patients and their relatives and in supporting the different country associations in sharing experiences and expertise

Volunteer

Rating: 5

I am so thankful to have the VHLFA as a valued resource and partner in my son's medical care! I am counting on the medical research to lead to a cure for VHL.

Previous Stories
6

Donor

Rating: 5

VHLFA has been such an awesome resource of support both emotionally and practically! When local doctors wanted to remove my son's adrenal glands, they were there to explain to me why that was not a good course of treatment for someone with VHL. I have also met others with similiar health issues, who have been amazing examples of strength. I value the people involved with VHLFA - it is good to know you don't have to walk this road alone!

Client Served

Rating: 5

I was diagnose VHl over 20 years ago, my doctors knew very little about the disease so for many many years it was a case of fumbling in the dark. On a trip to Chicago , I was introduced to the VHL Family Alliance - it was such a relief to talk to other people in a similar situation. The VHL Family Alliance has been literally a "life saver", the support, experience, understanding and contact with groups are amazing - a friend whom you can turn to when in need of advice and help. With VHL we all have to manage our own health and that of our families and VHL Family alliance give us the information and knowledge to do that.

Board Member

Rating: 5

I was diagnosed with VHL almost two years ago. The only reason I got the genetic testing for VHL was because of the VHL Family Alliance. The information provided and the outpouring of support from this group has helped tremendously in guiding me to find proper treatment.

Cindy50

General Member of the Public

Rating: 5

WHat a support system !!! My husband's whole family has this horrible disease and so does my child. I need resources such as this to keep my sanity. Thanks so much !

General Member of the Public

Rating: 3

I was diganosed with VHL 4 years ago and if it wasn't for VHL Family Alliance I don't know what I would have done. I'm from a country where the disease is extremely rare, the information is almost non existing and my life would have been a constant matter if I wouldn't have benefit from the help of VHL Alliance Family and its members. Great jos and keep up the good work! Thank you!

Client Served

Rating: 5

The vhl family alliance has been a great support to my husband and our family. We have greatly benefitted from emotional support and education that this organization provides.

Volunteer

Rating: 5

VHL Family Alliance has meant the world to me. Through this alliance I have met friends who can relate to the unique world of vhl. Questions, concerns and ideas about vhl have been through this organization. Many thanks and kudos to VHL Family Alliance. Truly, you have helped me climb the mountain of VHL . THANKS!!!!!!!!!!!

General Member of the Public

Rating: 5

VHLFA . . . .this is the most amazing organisation who supports all whose lives have been affected by this rare condition. Questions are answered, support given freely and with care, if you have VHL, or someone you love has VHL you will never walk alone as long as you are a part of this group.

Client Served

Rating: 5

This is an excellent organization. I have gained a vast knowledge of VHL thanks to them. A++++++++++++++

Previous Stories
8

Client Served

Rating: 5

I was diagnosed with VHL over 10 years ago now. Shortly after I found The VHL Alliance. They have been instrumental in helping me find AND secure the care I need. Thru them I found The National Institute of Health(NIH)in Bethesda, Maryland. There is NO DOUBT in my mind that I would not be around today if it wasn't for this organization. Joyce Graff and staff have been great!

Client Served

Rating: 5

My daughter and I were just diagnosed with VHL this summer. VHL Family Alliance and Inspire have been a God send for us!! Using the site, we were able to locate specialists in the area and the clinical care center. It has also allowed us to have important questions answered and to share concerns with others who are struggling with this syndrome. With all the misinformation that circulates on the internet, it is reassuring that we can go this site knowing that the information is relaible, relivent and updated.

Jim_36

Volunteer

Rating: 5

My VHL desease that my son, Christopher, and I am addicted with... VHL.ORG. VHLFA is the best, understanding most compassionate support staff, leaders, patient and members anywhere! I am a patient specialist support operations volunteer and chair committee participant now. Since summer 2010. They have been instrumental in our health and everyday journeys with VHL. TYVM VHLFA and all please continued support. Bless. R/ Jim F. Gandy, SFC, USA (Ret.)

tinadiane

General Member of the Public

Rating: 5

I was diagnosed with VHL in 2007, and was terrified. I turned to the internet and found the VHL Family Alliance. I ordered the handbook. I joined inspire.com. The knowledge that I gained from the handbook and advice from Joyce Graff, saved my life. I learned about when to have scans, what to expect, how to find great doctors and the courage to go on. Just knowing there are other people out there with the same rare disease is so comforting and powerful. I am now involved in 4 studies at NIH and have the best medical team in the country! I don't know where I would be today, in 2012, without the support of the VHL Family Alliance. I hate to think about that..............

Previous Stories
6

Client Served

Rating: 5

I am 51 years old. I was diagnosed with VHL only 3 years ago. As VHL is usually and inherited genetic disease, it is rare to be diagnosed at such a late age. I had already had 2 major surgeries with both adrenal glands and part of my pancreas removed. Somehow, no doctor had put 2 and 2 together to come up with correct diagnosis until 3 years ago. I was devastated to learn I had VHL. I am a Registered Dietitian and have worked in hospitals my entire life. I have seen the results of the type of tumors that folks with VHL get (renal cancer, ending up on dialysis; ocular tumors, ending up blind, pancreatic cancer, death or type 1 diabetes and malabsorption problems; spinal tumors, paralysis), and did not know where to turn. My husband and I had moved to a town with 6,000 people from Los Angeles and I already felt the impact of rural medical care. I eventually googled VHL and found the VHL Family Alliance Web Site and the Inspire.com support group. I ordered the VHL handbook. I asked questions. I began a dialogue with Joyce Graff, the Director. I started having the necessary medical scans. Many tumors were found on my pancreas, on my spine and in my lungs. The docs here in Central Oregon were stumped and offered advice that could have killed me. Through contacts made within this group, I was accepted for medical care at the National Institutes of Health in Bethesda, MD, and now am receiving the best medical care in the world. Without the VHL Family Alliance and inspire.com, I may be dead, or severly handicapped. I have met many people who also have this disease. We talk, laugh, and cry together. I have been able to help several folks with nutrition problems through this site. It is a Miracle from God and Joyce Graff is an Angel!!!!!

Jessica82

Client Served

Rating: 3

Best way to meet other people with VHL. Has been very useful and informative.

Client Served

Rating: 5

This ais an awesome!! My granddaughter and son-in-law have vhl. When my daughter passed away I was the one that needed to follow up on my granddaughters surgery's and required scans. This sit gave me help notnonly what needs to be done but emotional strength. Knowing others are fighting the same battle make me not feel so overwhelmed.

General Member of the Public

Rating: 5

One of my very dear friends has VHL. I spend a lot of time going to doctor appointments with her and supporting her in any way I am able. I have tried to learn as much as I can about VHL and have found the VHL Family Alliance invaluable. Their portal is nothing short of a Godsend. We use it often to chat with others about different doctors and approaches. Joyce Graff is an angel and an amazing resource. The VHL community is blessed to have the wonderful organization.

General Member of the Public

Rating: 4

This is the most useful Non Profit portal for VHL patients. The Portal is very informative and help the patient to understand about VHL disease and precautions to be taken. The most important about this portal is that people who have such disease are able to interact with other patients and share their experience. Hats off to Joyce Graff who is very cooperative and informative on this.

General Member of the Public

Rating: 5

After loosing my husband to vhl and my son being diagnosed with it, I find great comfort from all the support and advice.

Susie J.

Client Served

Rating: 5

This has been a really useful portal for information and support through to HLRCC, a rare genetic condition. Without the VHL Family Alliance I don't think our tiny group of sufferers would ever have been able to come together and share the life-saving information for patients, family and professionals. It has provided sufferers with a platform, a voice, information, comfort, support.

General Member of the Public

Rating: 5

i think this web site is fantastic it give's moral support, and it also give's us very good advice, i'm so glad i joined because now i don't feel so alone, and i know that if i need to talk ther is alway's someone out there who has felt the same way as i do at some tome in their live's

lilsis64

Client Served

Rating: 4

When I was diagnosed with VHL in 1999 I was in shock. My father had passed away due to complications resulting from VHL. My sister who is 4 years my senior had been sick with VHL as well for at least 13 years before I was finealy diagnosed. When I was diagnosed I was expecting something a little differant. I had many previous CT scans and MRI's and I was told it was anything from nerves to migraines to mental illness. I was scared and I got information that VHLFA existed. I thught it was only there for people that needed financing, I was not aware you could just call and cry and talk to them just like a friend, someone who really understands your feelings. I love VHLFA it is a blessing, between Joyce and NIH I am able to deal with things I do not understand. We can talk to her online or call and she listens and answers your questions and if she does not know, she will find out for you. Thank you Joyce and thank you VHLFA for being so wonderful. God bless all of you.

Previous Stories

Client Served

Rating: 5

I remember when I first found out I have VHL. I called and spoke with someone at the call center, they listened while I cried and asked questions. If I need to know something or I am just afraid of what is happening in my body all I have to do is call or facebook Joyce G. and there is someone who cares about me. I have had 5 brain surgeries and I am do for my kidney surgery very soon 2.8 cm. so I know it is comming but I also know I can call and ask VHLFA questions and they will do everything they can to help me. This is one of the most caring and loving team of people I have ever contacted running neck and neck with NIH. Thank you Joyce and thank you team. God Bless you and stay just the way you are!

Review from Guidestar

Mike N Cyndi G.

Client Served

Rating: 4

I love this organization. It is a great place to gather insightful information and meet new people who suffer like I do. Having VHL can make you feel very alone in this world, but connecting through this organization connects us with others going through the same thing. Information ix shard, and friendships are made. Thanks VHL and to Joyce Graff!

Volunteer

Rating: 5

I am a VHL patient and a Volunteer and this organization has been a life saver and a life changer for myself and my daughter who has VHL, as well. This organization has provided me with knowledge, doctors and clinics lists a community of others like me. My life and disease is supported and I am well-educated in my disease and cancer. I have never seen an organization that truly does what is says it will do. We, as patients, know the board members and the founders of this organization personally. They are involved in our lives and personally take the time to educate us and keep us informed of new information. Their are many meetings/symposiums around the world several times a year and as a Chapter Leader, I attend meetings on the regular every couple of months. This organization asks our opinions as well as our support. I am proud to be part of such a strong community of people, supporters and educators. I am proud to be on the front line of new research and solutions information. What more can a cancer patient/survivor ask for?

Donna B.

Client Served

Rating: 5

This organization is a lifesaver for those of us with VHL and for the Family Members/Caregivers of those with VHL. With a small budget this organization provides support to anyone with VHL as well as providing grants for cancer research. Joyce Graff is always up to date and keeping everyone informed of the latest information on treatment options and what's going on in research. She is also ready to reach out with a helping to hand to anyone with questions about treatment, referrals to specialists or whatever they need.

Previous Stories

Client Served

Rating: 5

This organization was a godsend when I found out I had VHL. I was able to call the hotline and talk to someone who actually had VHL. They immediately sent me the VHL handbook and other information to help me and my doctors understand what type of care I needed. They also have a forum so you can talk to others with VHL. They award grants to researchers looking for a cure.

Review from Guidestar

Volunteer

Rating: 5

The VHL Family Alliance as well as supporting people with VHL has reached out to others with rarer genetic conditions such as "Hereditary Leiomyomatosis and Renal Cell Cancer(HLRCC)" and "Birt-Hogg-Dubé Syndrome(BHD)". I have HLRCC and found that the organization called the HLRCC Family Alliance was being actively nurtured from an embryonic state by the VHLFA. The full resources of the VHLFA have been available to the HLRCCFA to get then into an up and running state, without which it would have faltered miserably, The VHLFA expertise and knowledge has been shared so that we all feel part of the bigger community. Help was given in the writing of a HLRCCFA Handbook and setting up of our own web site. Without doubt in my mind the VHL Family Alliance can be proud of its contribution to patient advocacy and is second to none.

Client Served

Rating: 5

I lost my father to VHL 33 years ago. There was no information at that time and my family felt very much alone. When my brother first became sick, we turned to VHLFA. They were there to help us understand he some of what was happening, supporting us each step of the way. VHLFA was there to help educate and support us through it all. They provide education to families as well as doctors that aren't familiar with this disease. As I now face the disease myself, I feel hopeful with all of the progress that is being made.

Client Served

Rating: 5

Myself and two out of my three children have VHL. The VHL Family Alliance has walked me through this disease since I was first diagnosed 20 years ago. The information on Vhl and screening is priceless to me and my doctors. So many times I have not felt that my doctors understand the disease and VHL Family Alliance is where I always turn. Now, in this new chapter of my life, the Alliance is walking me through getting the proper screening for my children.

Client Served

Rating: 5

I and three of my five children have VHL. The VHL Alliance has been three for me from the beginning when I first found out about our disease in 1992 when my daughter of four at the time, came home from preschool and I received a call from her teacher saying she was blind in one eye. We thought it was cancer and then learned it eas a hemangioma. She was blind in her left eye. We learned that we have people who helped us. We got help and were lead to testing for all of us finding that myself and three of my children of five have VHL. Since we have all had Pheochromosytoma tumors removed and some of us two surgeries. The alliance has been there to catch my tears and direct me and help me learn about everything.

Review from Guidestar

Professional with expertise in this field

Rating: 5

I am a physican working with VHL patients and patients with many other genetic diseases. The VHL FA is most helpful and best organized genetic support group of any kind. I wish patients with other genetic disorders had a support group as well organized and useful as the VHL FA.

Review from Guidestar

Client Served

Rating: 5

Dennis S

I received my first “The Family Forum” dated June 1, 1993 and probably have ever volume since then on file. They have provided a good reference over the years and have provided valuable information to our family. It was through the VHLFA Hot Line that I learned of the VHL protocol at NIH, and we have been going there since 1996. I am also grateful for The VHL Handbook in dealing with this disease.

Review from Guidestar

Donor

Rating: 5

The VHL Family Alliance has taken on and provided support with the most crucial elements surrounding the VHL disease and how it affects the patients, their families, friends, and doctors. The Alliance has been instrumental in getting the word out to the general public about this less common disease and with that, garnering interest and support. We are so grateful for all of its continued efforts!

Review from Guidestar

Client Served

Rating: 5

VHL.org has been a fund of information for us since my husband was diagnosed in 97 and my son in 98. I have even looked to this site to advise our family Dr. on what screening to do. The children's book was wonderful and has helped explained to our grandchildren how their little sister got VHL. Please keep us updated on any new procedures etc. as we look to you to keep us informed. Thank -you for all you do.
Linda Hayward
Bucksport ME

Review from Guidestar

Client Served

Rating: 5

I have been involved with the VHL Family Alliance since my son was diagnosed with the disease in 1992. It is my only source for meaningful information for this rare disease. The Family Alliance provides a wealth of resources in spite of its very tight budget. I have not seen any organization provide so much with so little. I am a huge fan of all they've done, with a special thanks to Joyce Graff, the engine that makes the VHL Family Alliance run.

Review from Guidestar

General Member of the Public

Rating: 5

I have been a member of the VHL Family Alliance since 1994 serving as the Minnesota Chairman until 2008. Everyone works and gives of themselves 100% to help others with VHL and inform the public at the same time. I knew very little in 1982 when I had my first surgery for VHL but this organization has since improved everyone's knowledge by the handbook, meetings, 1-800 phone number, internet information site, newsletter, printed brochures and a new member packet loaded with information. Since VHL is a rare disease and is undiagnosed for many families, it is very important that many doctors that deal with the eyes, brain, spinal cord, adrenal glands, kidneys also become familiar with making the correct diagnosis. The VHL Family Alliance has done everything possible in a 24 hour day, 365 days a year to achieve its goal and deserves a big pat on the back. Congratulations to all the Board Members, State Chairmans, Fundraisers who spend so many hours promoting such a wonderful and worthwhile organization.

Review from Guidestar

Donor

Rating: 5

Our son was diagnosed with VHL this year, and the doctors at Johns Hopkins referred us to the VHL Family Alliance. I have been very impressed at how responsive, compassionate, and effective this group is. They operate on a shoestring budget, and use every dollar they receive to fund research on better diagnosis, treatment, and a cure for VHL. In addition, they are a lifeline to individuals and families coming to terms with this rare genetic disorder.

Review from Guidestar

Volunteer

Rating: 5

I am a patient with VHL who has volunteered with the VHL Family Alliance since 1994. I took the Charity to the next level by making it an official Canadian Charity with a Registration Number. The first Candian meeting was held in a back yard in BC. There was another meeting in BC and a Global meeting held in London Ontario.

I've had multiple brain, spinal and kidney operations as well as the loss of one eye and through it all I used the information and professional guidance of the Alliance to help me cope.

The volunteers and Joyce Graff herself are both caring and professional at the same time. This organization has been fortunate in having a leader with the skills and dedication of Joyce Graff.

There is noting negative to say about the Alliance. Joyce has worked very hard on making sure the structure around her is solid moving forward and I do hope the organization stays strong if the time comes when Joyce has to step back.

Tania

Review from Guidestar

General Member of the Public

Rating: 5

I have a daughter who had a hemangioblastoma this past April. So far, she shows no other signs of VHL; and we are arranging the test to hopefully rule it out. However, this has caused us to become aware of this disease and to help in any way to find a cure! The VHL Alliance has been fabulous at providing information and support that we haven't been able to find elsewhere. They are encouraging to individuals facing this disease, and working hard to do what it takes to inform the public, and support finding an end to this disease. Thank you VHL Alliance!!

Review from Guidestar

Client Served

Rating: 5

VHL Family Alliance has provided information, inspiration, and assistance to my whole family. When my father died 15 years ago, very little was known about VHL. Now, because of the Alliance, physicians can connect with the latest information and studies. My physician, at OHSU, a fabulous teaching medical center, stays in touch and up to date with VHL.

Thank you, I'm grateful.

VHLFA deserves the award of $5,000 for progressing and making a huge difference in the medical world in such a fast trajectory.

Thank you,
Eva Sharlene Peters, PHD

Review from Guidestar

Client Served

Rating: 5

I can't say enough good things about VHLFA and Joyce Graff. They were a great support to my brother when he was battling the disease. Now that I am also fighting VHL, I have found it to be a great resource for information and support. They are constantly coming up with new ways to raise money and awareness. Together we can beat this disease!

Review from Guidestar

Donor

Rating: 5

The VHLFA has been an endless source of knowledge for this very rare disease. There is power in knowledege which deminishes fear.
Thank you to the staff at VHL Family Alliance!

Review from Guidestar

Client Served

Rating: 5

I am eternally grateful to Joyce Graff and the VHLFA. Without them my family and I would be totally lost. I was diagnosed with VHL in December of 1993. We were told this was a rare hereditary disease that was not commonly known by most doctors. I was being scheduled for surgery to remove a tumor that was at the base of my brain. Shortly after being diagnosed, my husband and I was watching a news show about a woman my age with this rare disease. To our surprise, it was VHL! My husband wrote the show and we were given the contact information for the VHLFA. I believe the alliance had just recently formed and we could not believe the timing of my diagnosis and the show. Over the last 18 years I have undergone over a dozen surgeries removing tumors from my body due to VHL. The VHLFA was a great source of information and supprt for myself and my family. I have used the 800 number numorous times over the years and we have attended several meetings organized through the VHLFA and medical professionals. I have been given the opportunity to talk to and meet people who live with the same condition and their families....I would never wish this disease on anyone else, but it helps to know you are not alone. Ironically through the years I have crossed paths with several people who either have VHL or knew someone with the disease. I felt confident in directing them to the VHLFA to help them deal with this disease. I have also had the pleasure of meeting with Joyce Graff several times over the years. She is a remarkle woman!!!

Review from Guidestar

Client Served

Rating: 5

I was diagnosed with VHL 2 years ago ( I was 33 ) after 2 brain and 1 spinal surgeries. When I was diagnosed I was just told what disease I have and I will have to be monitored. I went home and with "clear" mind started looking online what VHL is. The VHL Family Alliance was the only information I could find. When I typed VHL it was showing VH1 , not too encouraging ...... Thanks to VHL FAMILY ALLIANCE I got in touch with local VHL patients, found Doctors I need to see, found out where to get tested, really important things no one else told me. My son tested positive for VHL.....We are doing everything we can to support VHL FAMILY ALLIANCE to continue helping others like it helped me and finding a cure.
Thank you VHL FAMILY ALLIANCE for all that you do!

Review from Guidestar

Carlos Alberto Fredes

Client Served

Rating: 5

The VHL Family Aliance three years ago helped me knowing about this rare disease and with the support of Joyce Graff we made in Argentina The VHL Family Asociation and now the people who have this rare disease from South America, Latin America and the Caribbean can know about this disease thanks to the information that gives us The VHL Family Aliance.

Review from Guidestar

Brenna T.

Client Served

Rating: 5

I was diagnosed when I was approximately 20 years old. I was in the Army, stationed in South Carolina and far from my family in California. I felt isolated, scared, and uncertain of what was going to happen to me. My mother had been diagnosed years before, and I had lived in fear of being diagnosed with the same disease. When my mother told me about the vhl alliance, I was skeptical, but pleasantly surprised once I signed up for the website. Having a rare disease is hard, especially when you are younger and have no idea what could happen. Everything seems worse than it really is, but the alliance helped me with my fears, and keeps me informed on the upcoming events and the advances in research. I have even given presentations at military bases to urge people to donate to the cancer research funds. I can't imagine going through a diagnosis and life without people like Joyce Graff and the vhl alliance.

Review from Guidestar

4

Client Served

Rating: 5

Having a rare disease can be overwhelming! Because VHL is so unique, no one can really understand the questions and concerns you have. Finding the VHL family alliance was a godsend. From the great handbook which details all the testing, to the newsletters and bulletin board, it has all been a great help.

4

Client Served

Rating: 5

The VHL Family Alliance has helped me so much during this past year. I have had so many questions answered by so many affected by this awful diseae. Special recognition goes to Joyce for her dedication to this cause. She has given me so much peace of mind. I am so thankful for the VHL Family Alliance and hope and pray for a cure one day soon!

7

General Member of the Public

Rating: 5

This organization has helped me and my husband more than words can say. With VHL being such a rare disease even his doctors sometimes aren't sure how to treat certain problems that pop up along our journey to manage his health. This website has provided key information that has improved his quality of life and given us tools to help his doctors continue to check and prevent future health problems-we printed out the VHL handbook and gave it to the team of doctors that handles his care locally and they learned from it as well. The lectures on the website from a neurosurgeon at MD Anderson gave us key infomation we had been wanting concerning tumors on his spine. We from there went to see this doctor and our minds were put at ease and we learned even more about this VHL disease. The website is also so important to help us know there are others like us out there and it reassures us that we're not walking this road alone, others with VHL are contributing alongside us with contributions for research that hopefully will mean a cure for this one day.

9

General Member of the Public

Rating: 5

Hi, after 2 brain operations, radiotherapy and then an operation on his spine, we finally became aware of VHL. we thought this was soemthing that effected only my cousin, now, thanks to VHLFA, we know so much more. god bless you, and hopefully our group will grow, without too many more afflicted people. VHL is a minefiled that is never cleared.

7

Client Served

Rating: 5

The VHL 800 # was my first phone call on January 16th, 2006. This was the day that my son was the first ever in our family to be diagnosed with VHL. The only doctor that really knew what VHL was that first day was the neurosurgeon. I called to get some answers and find out about the disease and just to talk to someone. All of the staff at VHLFA is always extremely supportive and honestly a phone call away. I feel I have been blessed to have the VHLFA as a family member of someone with VHL and also a volunteer.

9

Client Served

Rating: 5

The VHL Family Alliance has been a wealth of information for us since our son was diagnosed with this disease. This organization offers the type of support to those with VHL that is very difficult to find anywhere else.

9

Client Served

Rating: 5

I was the first in my family diagnosed with VHL, although in hindsight several cousins had already died from complications arising from it. VHLFA provided education, support, and encouragement through the process of getting me and my family tested, and helping plan our attack. Thank you, VHLFA!

5

Professional with expertise in this field

Rating: 5

I have been working the VHL Family Alliance for many years since I first starting taking care of VHL patients at the National Eye Institute and later at the University of Pittsburgh and now at UCLA. This organization does a fantastic job of informing its members, providing clinicians with critical information which is essential since the condition is rare and most doctors are unfamiliar with its diagnosis and management. The VHLFA has sponsored outstanding workshops to bring experts in contact with patients, provides support to each other through its newsletter and blog. Though small and with limited funds, the VHLFA has encouraged dialogue and collaboration among research groups working on the disease and has helped to support clinical research studies. Finally, the VHLFA has made a major contribution to the care of VHL patients worldwide by creating and certifying treatment centers of excellence in which patients can receive coordinated and expert care for all of the manifestations of VHL. I am extremely proud that UCLA is now one of those centers. No other organization with which I have worked (and I deal with many) has used its resources so wisely and to accomplish so much for those who need help.

8

Client Served

Rating: 5

I was diagnosed with VHL in 1981. I have called their 800 hotline for help many times. They not only recommend doctors,and Hospitals they supply comfort and hope for those of us with the disease. I find that VHL family alliance is a big part of my live.

5

Client Served

Rating: 5

My brother was diagnosed with VHL 8 years ago. He was losing the feeling in his fingertips and was getting headaches and heard fluid sloshing in his ears. He thought he had a sinus infection. He finally took himself to the hospital emergency room and a Cat scan showed a hemangioblastoma on his brain stem, as well as a build-up of spinal fluid on the brain. He required immediate surgery and a shunt. It was then determined that he had multiple brain, spine, and kidney tumors. His first surgeon thought he had kidney cancer that had spread to his brain. One of the neurology residents suggested VHL. No one else in our family had ever heard of it. We immediately started researching and found the VHL Family Alliance online. They provided us with the education that we so desperately needed. The handbook, the newsletter, the conferences, were all invaluable in our quest for timely information and proper care. We were able to be proactive and inform various doctors about the disease and it's ramifications, as well as the various surgical, radiation, and medication options available. We mailed copies of the VHL newsletter & handbook to every new medical professional involved in my brother's care prior to new appointments. They have all been grateful for the education. The VHL Family Alliance has also been a source of emotional support. They helped us move through the stages of diagnosis shock, surgical and procedural fear, and inability to cope to the ability to empower ourselves through education. It's a great equalizer to be a successful partner in one's treatment rather than a pawn. We will always be grateful to the Alliance for their guidance and suport.

9

General Member of the Public

Rating: 4

My father has VHL. We never knew what VHL was in the first place. We were in shock. I was in Canada, far away from home and my father; They are in Thailand. The website significantly helped me to understand and be able to investigate more about VHL. It helps my family to know that there are other families out there facing the similar situations like us. But we still have hope for our future.