Others praised SpaceX’s mission, jobs and investments in the area.
Ndeye Lam sends a prayer at the foot of her daughter Mariama’s grave in Dakar, Senegal, Saturday, Jan. 11, 2025. (AP Photo/Annika Hammerschlag)Globally, more than 350 million people live with
, most of them caused by a misstep hidden within their genes. Some conditions can be caught early and treated—but in parts of Africa where population data and resources are scarce, many people go undiagnosed. Rodriguez is trying to change that by connecting patients with genetic testing and medical support, while gathering key data from those patients and their families.“Most rare disease data has been collected from people of European ancestry, so we have very little knowledge about what’s happening in other parts of the world, mainly in Africa,” Rodriguez said.Ndeye Lam looks at photos of her deceased daughter Mariama who died at age 13 of a rare genetic disease, in Dakar, Senegal, Saturday, Jan. 11, 2025. (AP Photo/Annika Hammerschlag)
Ndeye Lam looks at photos of her deceased daughter Mariama who died at age 13 of a rare genetic disease, in Dakar, Senegal, Saturday, Jan. 11, 2025. (AP Photo/Annika Hammerschlag)His research is funded by organizations including the La Caixa Foundation in Spain and the National Ataxia Foundation in the United States. And he has consulted with scientists in China, France, Boston, and elsewhere around the world, documenting rare diseases and novel disease-causing gene variants.
That research is creating a library of genetic data for scientists and clinicians. Patients in Senegal are benefiting, too, with a path to diagnosis.
Fatoumata Sané holds her daughter Aissata, 8, who suffers from a rare genetic disease, at their home in Dakar, Senegal, Saturday, Jan. 11, 2025. (AP Photo/Annika Hammerschlag)The study tracked 30 years of living kidney donation and found that by 2022, fewer than 1 of every 10,000 donors died within three months of the surgery. Transplant centers have been using older data – citing a risk of 3 deaths per 10,000 living donors – in counseling donors about potentially deadly surgical complications.
“The last decade has become a lot more safe in the operating room for living donors,” said Dr. Dorry Segev, a transplant surgeon at NYU Langone Health. He co-authored the study published in the journal JAMA.Newer surgical techniques are the key reason, said Segev, calling for guideline updates to reflect those safety improvements – and maybe increase interest in living donation.
He often finds transplant recipients more worried about potential risks to their donors than the would-be donors themselves.“For them, this is even more reassuring to allow their friends or family to donate on their behalf,” Segev said.