Global Genes LIVE! Get ready for an (un)Summit! Find a variety of engaging and educational online events, meet-ups, workshops and performances. (un)Summit: September 15-25, 2020 A RARE Patient Advocacy (un)Summit. This two-week event will provide members of the rare disease community and allies with ways to connect and engage with each other through interactive activities […]
(un)Summit: A RARE Patient Advocacy Read More »
AMPI (Alliance to Protect Medical Innovation) created this video. It is to inform legislators of the impact that our country’s various forms of investment in rare disease research has. APMI Mission Statement More life-changing medicines are available to patients now than ever before. With new medical breakthroughs treating once-untreatable conditions and diseases is possible. Innovation
AMPI Rare Disease Video Read More »
Tosin details how to use the website, brand new initiatives, and great strides for the future.
Black Health Matters Read More »
Hello warriors! We have just over a week until February 28th, which is Rare Disease Day! In the US, a rare disease is defined as one that affects a minor population of less than 200,000 people. Sickle cell disease falls under the collective umbrella of Rare Diseases, so its another great opportunity to spread the
Rare Disease Day Countdown! Read More »
World Sickle Cell Day Hello Warrior Family! Don’t forget, today, Tuesday June 19th is World Sickle Cell Day. This was specially designated by the World Health Organization in 2009 to improve the education, research, and awareness of sickle cell disease on a global scale. For us warriors, it is like your sickle cell birthday!!! We have
World Sickle Cell Day 2018 Read More »
Today I want to share something with you. It’s something I rarely talk about and that very few people know about me. But, since yesterday was my 5 year anniversary, I am overwhelmed with feelings. I can’t believe where I am in my life today and want to share my happiness with you. As
Meet Henrietta: Student, Nurse, Warrior, Transplant, Sickle-Free! Read More »
I’m not a warrior but I’m a warrior wife, so I’ve been on the other side of your story. I hope that this gives you hope and courage to face whatever relationship hurdles you are going through. My story is almost something out of a Nigerian movie, but this is a true story. My true
Love Overcomes Sickle Cell: Meet Linda & Steve Read More »
It’s been very hard to obtain life insurance with sickle cell disease. Here are a few tips that may get your application approved.
Life Insurance with Sickle Cell Read More »
This week was a sad week for my family because after twenty years, I have decided to transfer to another hospital for the medical care for my 8 year old Sickle Cell warrior. Knowing that everyone on your child’s medical team has your family’s best interest is one of the greatest components. However, when you
Who’s Really On Your Sickle Cell Team? Read More »
