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
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!
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.
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.
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.
My family and I are so grateful for the VHL Alliance. Through resources and forums we get much needed information to our physicians.
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..
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 email@example.com. Gracias familia
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
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.
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!
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.
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.
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 !
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!
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.
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!!!!!!!!!!!
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.
This is an excellent organization. I have gained a vast knowledge of VHL thanks to them. A++++++++++++++
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!
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.
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.)