Von Hippel-Lindau (VHL) Community

Meet, discuss & support other patients or families living with Von Hippel-Lindau (VHL). Contribute to topics, or just share what's on your mind.

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martacampabadal
moderator

Advancing VHL awareness in Canada

From: www.facebook.com/vhlcan/

Advancing VHL (von Hippel-Lindau Syndrome) awareness! VHL Canada is an official charity, joining 200 other national registered charities, taking part in this extraordinary fundraising event: Scotiabank Toronto Waterfront Marathon's Charity Challenge October 22, 2017. More info will follow...

https://youtu.be/CIpbcbZPEhY (2 min)

more info http://www.torontowaterfrontmarathon.com/c...

martacampabadal
moderator

MAy is VHL AWAreness MontH!

Von Hippel-Lindau (VHL) Awareness Month, held in May each year, presents a great opportunity forproviders, patients, caregivers, and the
community to raise awareness about VHL. Raising awareness
improves diagnosis and treatment, increases fundraising opportunities, and ultimately will help contribute to finding a cure.

Please let me know how I can participate even if I am thousands miles away. I would love to learn more about VHL and teach others more about it. Here in my country is hardly known please.

martacampabadal
moderator

I believe there's a VHL support group in SA. Do you know them?
http://sa.connectedafrica.org/profile/msgj...

I'm sure the VHL Alliance will have some ideas on how to raise awareness:
VHL.org

Best,
Marta

Interviewees?

Are there any people out there whom I can discuss the disease with? (Specifically individuals with VHL or parents/family of people with VHL?)

Thanks. :)

SandraRC
moderator

VHL's Community Map

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.

https://www.rareconnect.org/en/community/v...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!

martacampabadal
moderator

Designado un nuevo medicamento huérfano para la enfermedad de Von Hippel-Lindau

La Agencia Europea del Medicamento (EMA) ha designado el propranolol como nuevo medicamento huérfano para el tratamiento de la enfermedad de Von Hippel-Lindau. Esta designación se ha conseguido gracias a las investigaciones preclínicas de un grupo del Centro de Investigación Biomédicia en Red de Enfermedades Raras (CIBERER) que lidera la Dra. Luisa Botella en el Centro de Investigaciones Biológicas (CSIC) con la colaboración de la Alianza Española de Familias de Von Hippel-Lindau. El CSIC es el sponsor de este medicamento.

El propranolol es un fármaco de reposicionamiento para su uso en von Hippel-Lindau ya utilizado para otras enfermedades. Por tanto, se conoce su perfil de seguridad y efectos secundarios.

Más información:
Noticia CIBERER:
http://www.ciberer.es/noticias/designado-u...

Gerhard
moderator

What great news, congratulations! Thanks to the spanish VHL Alliance!

martacampabadal
moderator

1er encuentro de familias con VHL en México

VHL México os invita el próximo 17 de Febrero al evento dirigido a familias y a profesionales de la salud.

Más información en
alianzavhlmexico@gmail.com
Telf.: 2227286052

https://www.rareconnect.org/en/community/v...