Keratoconus Group | Support Community and Blog

Rare Disease Day 2019

Our community's mascot, Keratocat, has joined the #ShowYourRare campaign and painted his face with the Rare Disease Day logo colors.

Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. the first Rare Disease Day was held on February 28, 2008, the date was chosen because February 29 is a rare day.

Rare diseases affect an estimated 300 million people around the world. There are over 6000 different diseases. So rare is not so rare after all. Support the rare disease community by spreading the word. With your help, we can raise awareness and increase support for research.

Is keratoconus a rare disease?

According to the National Eye Institute's published data, keratoconus affects about 1 in 2000 people and it can be considered a rare disease by definition.

However, it seems keratoconus is more common than we think and recent studies suggest the prevalence may be significantly higher than 1:2,000, that being said, Rare Disease Day is still a great opportunity for all of us to spread awareness about orphan diseases and keratoconus.

Rare Disease Day 2019

The theme for 2019 is "Bridging health and social care". The 12th edition of Rare Disease Day will focus on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families around the world face every day.

For most people living with a rare disease, as well as their family members or carers, the reality of daily life can include any combination of the following: collecting and taking medicines, attending appointments, participating in physical therapy, using specialist equipment and accessing various social and community support services and respite care. Managing these care-related tasks alongside their usual daily activities such as work, school and leisure time can be challenging.

Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better coordinate all aspects of care for people living with a rare disease.

Rare Disease Day is for everyone, the general public, rare disease patients, their families, carers, healthcare professionals, researchers, companies and politicians. You do not have to be directly affected by a rare disease, everyone can get involved. Take part in an interactive face paint social media campaign to raise awareness of rare diseases and show your support for the rare disease community! Post an image or selfie on any social media channel with your face painted and include the #ShowYourRare, #MyRare or #RareDiseaseDay hashtags.

If you would like to post updates on your website and social profiles about the Rare Disease Day, you can find images and other helpful materials on the Rare Disease Day website.

Change your Facebook profile picture

You can spread keratoconus awareness with each and every interaction on Facebook without even saying a word. You can add these frames to your current profile photo, or use the Facebook app's camera to take a new photo or video with these overlays.

Let us know what you think and tell us how we can better spread awareness. Make sure to like our Facebook page and check back soon for new frames.

Keratoconus Group supports Rare Disease Day

We proudly support Rare Disease Day and the global effort to raise awareness about rare diseases, the importance of research to develop diagnostics and treatments, and the challenges faced by patients with rare diseases and their families on a daily basis.

Keratoconus Group is an official friend of Rare Disease Day 2019 and we proudly support the Rare Disease Day events by spreading awareness about rare diseases and their impact on patients' lives, and we encourage our community members to talk with their family, friends, and colleagues about rare diseases, and get involved with or host an event for the day.

We would like to thank the European Rare Diseases Organisation (EURORDIS) for this great opportunity. We would also like to thank Reddit Inc. for providing us with free sidebar banners for our subreddit to help us spread awareness.

Keratocat cartoon by

Share to spread awareness!

20 comments:

  1. I can’t believe this is really true I never believe there is cure to this hsv 2 because all the hospital have told me there is no cure to it, few months ago I saw this man email DR.AZIEGBE on internet from a testimony share by someone who he help with his herbal cure I contact his email and ask for his help also, that is how he inform me about the cure process and this man sent me a herbal medicine which I took according to the way he instructed for 2 week I can’t believe when I go for test my result come out negative i am so happy to share this to the world there is real cure to herpes you can also contact DR.AZIEGBE through his email now [email protected] COM and also WhatsApp him +2349035465208. or my assistant whatsApp me +1 (601) 452-8622 or email: ;
    Diabetes, Lupus, Hepatitis A,B, Infertility, HIV/AIDS, [email protected] COM...
    He also have herbs medicine to cured the following diseases

    ReplyDelete
  2. I can’t believe this is really true I never believe there is cure to this hsv 2 because all the hospital have told me there is no cure to it, few months ago I saw this man email DR.AZIEGBE on internet from a testimony share by someone who he help with his herbal cure I contact his email and ask for his help also, that is how he inform me about the cure process and this man sent me a herbal medicine which I took according to the way he instructed for 2 week I can’t believe when I go for test my result come out negative i am so happy to share this to the world there is real cure to herpes you can also contact DR.AZIEGBE through his email now [email protected] COM and also WhatsApp him +2349035465208. or my assistant whatsApp me +1 (601) 452-8622 or email: [email protected] COM...
    He also have herbs medicine to cured the following diseases;
    Diabetes, Lupus, Hepatitis A,B, Infertility, HIV/AIDS, CANCER

    ReplyDelete
  3. It's hell to live with the HERPES virus, I lost almost almost everything that made me a complete human and also suffer rejection and pains, My life was drastically going down the drain till I found useful information online that directed me to this website 'herpesredemption.com' where I read useful information about the virus and also contacted the email provided and to cut the story short, I was given instructions which I followed and the remedy was given to me, I used it and got healed.

    ReplyDelete
  4. Happiness is all i see now I never thought that I will be cured from HIV/AIDS virus again. I have been suffering from a deadly disease (HIV/AIDS) for the past 3 years now, I had spent a lot of money going from one places to another, from churches to churches, hospitals have been my home every day residence. Constant checks up have been my hobby not until this faithful day, I was searching through the internet, I saw a testimony on how DR EKPEN helped someone in curing his HIV/AIDS disease, quickly I copied his email which is [[email protected]] just to give him a test I spoke to him, he asked me to do some certain things which I did, he told me that he is going to provide the herbal cure to me,which he did, then he asked me to go for medical checkup after some days after using the herbal cure, behold I was free from the deadly disease, he only asked me to post the testimony through the whole world, faithfully am doing it now, please my beloved brothers and sisters, he is great,I owe him in return. if you are having a similar problem just email him on ( [email protected] ) or you can whatsApp/call his mobile number on +2349069921316

    ReplyDelete
  5. Happiness is all i see now I never thought that I will be cured from HIV/AIDS virus again. I have been suffering from a deadly disease (HIV/AIDS) for the past 3 years now, I had spent a lot of money going from one places to another, from churches to churches, hospitals have been my home every day residence. Constant checks up have been my hobby not until this faithful day, I was searching through the internet, I saw a testimony on how DR EKPEN helped someone in curing his HIV/AIDS disease, quickly I copied his email which is [[email protected]] just to give him a test I spoke to him, he asked me to do some certain things which I did, he told me that he is going to provide the herbal cure to me,which he did, then he asked me to go for medical checkup after some days after using the herbal cure, behold I was free from the deadly disease, he only asked me to post the testimony through the whole world, faithfully am doing it now, please my beloved brothers and sisters, he is great,I owe him in return. if you are having a similar problem just email him on ( [email protected] ) or you can whatsApp/call his mobile number on +2349069921316..

    ReplyDelete
  6. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis

    ReplyDelete
  7. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis ..........

    ReplyDelete
  8. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis ..

    ReplyDelete
  9. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis ,,,.///////

    ReplyDelete

  10. Am really grateful and thankful for what Dr. Destiny has done for me and my family with is herbal herbs , I have be suffering from HSV 2 for good three years with no solution, the virus cost me so much pains and because I was unable to get into a relationship and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email him below ([email protected] ) and get your healing. He has cure for other deadly diseases like Herpes, Hiv/Aids, Hepatitis , Cancer etc.call +2348130871253 or whatsapp +2347060571038

    ReplyDelete

  11. Am really grateful and thankful for what Dr. Destiny has done for me and my family with is herbal herbs , I have be suffering from HSV 2 for good three years with no solution, the virus cost me so much pains and because I was unable to get into a relationship and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email him below ([email protected] ) and get your healing. He has cure for other deadly diseases like Herpes, Hiv/Aids, Hepatitis , Cancer etc.call +2348130871253 or whatsapp +2347060571038

    ReplyDelete

  12. Am really grateful and thankful for what Dr. Destiny has done for me and my family with is herbal herbs , I have be suffering from HSV 2 for good three years with no solution, the virus cost me so much pains and because I was unable to get into a relationship and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email him below ([email protected] ) and get your healing. He has cure for other deadly diseases like Herpes, Hiv/Aids, Hepatitis , Cancer etc.call +2348130871253 or whatsapp +2347060571038

    ReplyDelete
  13. I Am here to testify of the miraculous work of a great traditional doctor called Dr Odudu ..I have been suffering from HIV/AIDS since last 2 months but today I am happy that am cure from it with the herbal medicine made by Dr Odudu the great healer, I was browsing the internet searching for help when I came across a testimony shared by someone on how Dr Odudu cure her from HIV Disease. I quickly contacted him to get the cure and today i am now free from the Virus, I am so much happy today that we have someone like this great healer out there, so' people out there kindly contact this great doctor on his email address please sir keep your good work cause there are people out there who is in need of your healing medicine .once more contact him now [email protected] Dr odudu can prepare Herbal medicine for all kind of disease. CANCER. HEPATITIS B .DIABETES. COLD SORES. Syphilis. HBV, HPV, STD's And many more. contact Dr odudu to get your CURED Email : [email protected] CONTACT WHATSAPP +2347060507634

    ReplyDelete

  14. Am really grateful and thankful for what Dr. Destiny has done for me and my family with is herbal herbs , I have be suffering from HSV 2 for good three years with no solution, the virus cost me so much pains and because I was unable to get into a relationship and I was also loosing lots of money for medication, but one faithful day when I went online, I met lots of testimonies about this great man so I decided to give it a try and to God be the glory he did it. If you need his help or you also want to get cured just the way I got mine, just email him below ([email protected] ) and get your healing. He has cure for other deadly diseases like Herpes, Hiv/Aids, Hepatitis , Cancer etc.call +2348130871253 or whatsapp +2348078275203

    ReplyDelete
  15. i want to inform the public how i was cured of HERPES Simplex Virus by a
    Doctor called Dr.Aikhomu. i visited different hospital but they gave me list
    of drugs like Famvir, Zovirax, and Valtrex which is very expensive to treat
    the symptoms and never cured me. I was browsing through the Internet
    searching for remedy on HERPES and i saw comment of people talking about
    how Doctor Aikhomu cured them. I Was scared because i never believed in the
    Internet but i was convince to give him a try because i was having no hope
    of been cured of HERPES so i decided to contact him on his email, i
    searched his email on net and i saw a lot of people testifying about his
    goodness. when i contacted him he gave me hope and send a Herbal medicine
    to me that i took and it seriously worked for me, am a free person now
    without problem, my HERPES result came out negative. You can contact him on
    his Email: [email protected] or CALL/ whatsappl him +2348100962873 and get all
    your problem solved.
    1)Sickness of any kind
    2)Help to CURE Hepatitis B, HIV/AIDs CANCER and BIPOLAR
    3)Divorce, Breakup problem and To Re-unit
    4)Pregnancy problem
    5)Financial problem and Job promotion
    6)To get a good and rich life partner
    7)To Lose your wath
    8)to enlargement of pennis

    ReplyDelete
  16. I am here to give my testimony about Dr. Tashe who helped me. I want to inform the public how i was cured from Herpes disease by Dr. Tashe, i visited different hospitals through my 6 years of been HIV positive but they said there was no cure for it and had to keep taking some herpes antiviral drugs which was very expensive for me. I was browsing through facebook i saw a lady talking about how Dr. Tashe cured her Herpes. I talked with the lady for few hours and emailed Dr. Tashe that same day. When i contacted him he responded in hours and gave me hope and also sent a Herbal medicine to me that i took for just 14 days and it really worked for me, my Herpes result came out negative. I am so happy as i am sharing this testimony. My advice to you all who thinks that there is no cure for Herpes, that is Not true, just contact him and get herbs cure from Dr Tashe. email: [email protected] or you can also call or whatsApp: +2348154724883

    ReplyDelete
  17. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis

    ReplyDelete
  18. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis ......../

    ReplyDelete
  19. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis /............

    ReplyDelete
  20. God bless Dr AIKHOMU for his marvelous work in my life, I was diagnosed of HERPES SIMPLEX VIRUS since 2017 and I was taking my medications, I wasn't satisfied i needed to get the HERPES out of my system, I searched about some possible cure for HERPES i saw a comment about Dr AIKHOMU, how he cured HERPES with his herbal medicine, I contacted him and he guided me. I asked for solutions, he started the remedy for my health, he sent me the medicine within 3days. I took the medicine as prescribed by him and 2weeks later i was cured from HERPES contact him via email once again thanks to you Dr AIKHOMU. cure the flowing virus, contact his email [email protected] or add him on whatsapp +2348100962873

    cancer cure
    diabetes cure
    ringing ear
    herpes cure
    warts cure
    HPV cure
    HIV cure
    get your ex back
    pregnancy herbal medicine
    Hepatitis /............

    ReplyDelete